Update on my tests today-and thanks

k2626

Thank you all for your well wishes. As mentioned I went to get a biop today and the dr said she wanted imaging first. She felt lymph nodes under left arm pit and either former dr missed or they are new. Got in for imaging-mamo and US clear. However, the rad dr said he's never seen IBC since its so rare and its something you hear about in school. Yeah-that made me feel confident. He did admit a mamo and US aren't the best diagnostic for IBC but it can be helpful. He said he saw the nodes but they weren't grossly inflamed and looked totally benign in nature.

SO I called the surgeon AGAIN requesting a biopsy AGAIN. I also made an appt for Fri to see my old OBGYN in the city. Feel like nobody is taking proper steps here.

On the other side, the rad dr and nurse also said usually IBC would of shown additional changes by now vs the skin staying the same. However, I consider nodes that were found MORE potential issues even if they look benign.

They admitted something is wrong and maybe its just inflammation being fought off-Im thinking like IBC? They kept saying over and over it would be grossly evident by looking at it. However, thanks to this board Ive found that is NOT the case.

Words of wisdom appreciated, insight etd

k2626

thanks for the responses. I have an app with a surgeon on Wed. They outright refuse to do an MRI as I'm not on my cycle and they said hormones will give a false pod. So we will see fear happens I feel very boxed it. It's light beige still 

aloneandscaredCanada

OMG I feel sick for you I have gone 7 months between GP - dermatologist and Breast doctor.... Told 100 percent IBC had mamo and ultrasound I have skin color change 6 skin lesions leaking clear fluid daily and for 3 months golf ball size swelling order right armpit. Now I have constant bruising vomiting blood, hair loss and vision determination. I was told spider bites, preo metaposal, acne and foliculitis been on 6 rounds of ainbiotics with no change. My mamo show over 75% breast density (only did one breast) and cysts in botH that corolation to the skin lesions and thickening that have not dissapeared in 7 month plus hypochoic lesions. I am starting to think I'll die before they get it... NOT one of my doctors has seen it clinically....FIGHT for you health.

alicki

Dear K626 and aloneandscaredCanada,

I don't have IBC but I did have one hell of a scare last year and had to go abroad and even went to the extreme of having a breast reduction to get answers (which I do not recommend).

I would highly recommend that you get yourselves to MD anderson in texas? I'm living in Europe and I was in contact with them last year but found a nearer doctor in England who sorted me out. (fibrocystic breast, lymphgentis, mastitis).

It freaked me out and I would like to thank all the women on this forum who helped me through this.

My recommendation is: go to the best place, a clinic where they specialize in this, yes it may be far, it may be costly and insurance might not pay for it. But if you can afford it, then go. Peace of mind is invaluable.

I had 3 MRIs, uncountable ultrasounds, 4 skin biopsies, 1 mammogram and 1 breast reduction to get cleared. I was facing a massive 'wait and see' approach from the local hospital and getting comments like 'well, we've been careful with you, but IBC can show itself in a few months' WHAT?????????????? So, I went ahead and got a reduction and got the bad part  taken off and analysed, every single bit of it, which led the doctors to thinking that I am/was mad.

It's your body, no one cares for it as much as you do.

Good luck to you both,

Alicki

Kicks

aloneandscaredCanada - I'm not understanding what you are saying.    Are you saying that you have a DX of IBC or not?    ("Told 100 percent IBC" - "think I'll die before they get it") 

k2626

Thanks guys-its very light beige Ive been taking pictures and it doesn't seem to have changed for the better. So I will AGAIN demand a biopsy tomorrow, and will be bringing literature on this with me tomorrow. Ive been dealing w this for over 3 wks!!!!