HELP! Support needed...could I have IBC?

abatellik

Catmandu,

I was diagnosed a couple of months ago with IBC (although the doctors are still not convinced it is IBC and not IDC), and in my opinion the waiting is actually the WORST part of the process. If it does turn out to be IBC, meeting with the docs and having a plan in place is SOOO much better than the waiting and wondering... I know it is all so overwhelming, but good for you for taking your symptoms seriously. I am 30 years old with no history of breast cancer in my family, but my nurse practioner took it seriously (and I had very few symptoms- a swollen breast, which I thought was leftover milk from breastfeeding) and saved my life because of it. Your family is right though, most of the time it IS nothing! So I will pray for you that that is what it will be for you... But even if it is IBC, there is always hope so please never forget that! 

Catmandu

Well had my mammogram and then they took 4 more views after that, then I had an ultrasound.  Next the radiologist came in herself and did an ultrasound herself besides what the tech did, which I thought was strange but don't know if that is strange or not???  She said, good news is I don't see any lumps or anything like that.  You have skin thickening in the area where your redness is.  She assured me that I have a great caring doctor who really listens and was in good hands and that was it.  I am not sure what to make of this.  Could this mean I am in the clear or just that I will probably have to have a skin biopsy?  More ANXIETY for me!  lol

Catmandu

BTW they are ordering my last mammo from 06 from Ohio to compare but she said that would probably take like a week or 2.

mrsnjband

It took an MRI to find my IBC.  It doesn't always show up on a mammo or us.  So keep after them. NJ

Catmandu

Thanks and I will.  My redness is much less now however, still itches sometimes just like before, still extremely swollen breast, still sharp needle pain that is very annoying and not at the rash site though, and still never a fever!  Frustrated and wondering if the skin thickening on the mammo/US means anything to worry about or not?

Catmandu

Where my rash area is isn't even really red now but kinda looks more like a bruised area now?  I didn't have any kind of trauma.  Any ideas as to what this could mean??

leisaparis

Unfortunately it could mean IBC. Everything you have described points to that. Doesn't mean it is, just that it's a possibility. Since you DID have skin thickening show up on the mammo, that's a good indicator. Almost always that's how IBC appears. Not 100% of the time, but alot of times.

Goodwife1

Get a Breast MRI.  I had a lump under my armpit.  That was it nothing else.  Went to a surgeon my H works with.  He did a needle BX in office.  Stuck it in my armpit 4x's.  Called back and everything is great.  It will probably just go away by itself.  Well he did bx incorrect and 10 months later my breast swelled.  IBC stageIV mets to skin now.  I don't say this to scare you.  I say this for you to push your Drs.  I didn't know, I thought he is the surgeon.  Get a Breast MRI. Mammo showed nothing.  Ultrasound showed 1 lump MRI showed another lump. Go to a Breast specialist.  See if any hospitals in your area have Drs that deal with IBC.  Make sure.  Good luck!

chester2010

My mammogram showed 'skin thickening'.  MRI confirmed IBC. The breast was not swollen and just a very faint pink blush with no peau d'orange skin.  Nipple did invert.  Symptoms are all different but you should pursue this for your own peace of mind.  Good luck and I pray it is not IBC.

abatellik

I think there is just so much they don't know about IBC yet that if you have a couple of the symptoms and a positive biopsy, they will diagnose you with it even if they are unsure.

HollyinMich

Catmandu - Any news?  Still thinking about you and hoping you are doing well.

Catmandu

Hi Holly!  Other than mammo showed skin thickening.....nothing!  The radiologist does want to get my old mammo from Ohio to compare, but I already know that my last one did not show skin thickening.  I am a medical coder so I always get copies of everything I have had done and read the reports so I know this for a fact to have not already been there.  I have an appointment with breast specialist today at 10:30.  Would like to convince her to do a breast MRI and biopsy so I know exactly what is going on.  Redness is gone now, just appears kinda bruised or discolored, still swollen though and skin still looks like orange peel and the thickness and itchiness has moved up now just below the nipple.  Hopefully I get some answers this week.

Catmandu

Had a punch biopsy today and results should be back by Thursday.  It was very strange because I couldn't even feel the needle when she injected the anesthesia or the burning she said I would experience with the medication going in!  I didn't feel anything of the procedure either.  She said that was very strange because almost everyone about comes off the table with this bx.  I am not sure what to make of that....that the feeling is gone in that area of my breast????

HollyinMich

Glad that they did the biopsy and so glad that they are working towards getting you some answers!  I don't remember if I had any numbness in my skin.  I didn't have a punch biopsy.   I ended up with a surgical biopsy because I also had a 4 - 7 cm lump (IDC tumor) as well.  So they took a section of skin along with the tumor when they biopsied me.  Lucky me to have had two different types of cancer in the same breast, lol.  Praying for the best for you and keep us posted on your results!

chester2010

I can remember the punch biopsy being very, very painful.  The Dr. had to keep on injecting anaesthetic as it was so bad.  I'm not a baby but this was the worst!  But don't go reading anything into this because you didnt feel any pain -- that must be good and we pray that it's not cancer..

leisaparis

I had a large amount of thickening. I too did not feel anything when they did my core punch biopsy. They told me to expect it to hurt but that they would try to be as quick as possible. They took 6-8 punches & I felt nothing the whole time. They gave me an ice pack to put in my bra for the ride home but I didn't need it. It never even hurt after. I don't know if it has to do with the fact that I have a VERY high pain tolerance or not. Even after both my surgeries I never even had to take any pain meds.

Catmandu

I don't really have an exceptional pain tolerance.  I had a needle biopsy several years ago and the lump was a fibroadenoma and that hurt some.  This I felt nothing at all with this.  They only took 1 punch area and then she cut off or out a little more with some scissors.  My area is spreading tonight too. If my biopsy does come back negative I think I may request an MRI since it doesn't seem to be getting better.  Regardless of what it is, I want to know so it can be treated.  This waiting game is very difficult. 

HollyinMich

The waiting game is honestly the worst part.  You feel like everything is hurry up and do this then wait.  Have you asked for an antianxiety med like Xanax? That really does help and it certainly doesn't hurt to ask for something.  Sending you lots of hugs!

Catmandu

Still no call from doc. I called and was told someone would call me back after seeing patients this morning. Maybe its good news since they didn't call me first thing this morning!

Catmandu

The single biopsy she took shows inflammation.  I told her that the area started getting bigger, still am having intermittent pain, breast is still way bigger than the other one, and still can see the "pores" on the affected area...idk if it is really like orange peel or not...my daughter says yes!  She wants to try more antibiotics and said if my symptoms progress over the weekend to call the doctor on call and see them.  I really am not sure what to do here.  My boss, who is an RN, said If it isn't any better or gets any worse that I should look for another breast specialist and make sure they have experience in diagnosing IBC before making an appointment.  She thinks that if it were an infection that I should be a lot better instead of it appearing to spread.  I am frustrated and to the point of crying...which I DON'T do normally.  I just want to know what is wrong and for the symptoms to go away! 

HollyinMich

So very sorry for your frustration! Your boss is right, find another breast specialist pronto and insist on a breast MRI.  Yes, the pore look is indeed peu d'orange (orange peel look).  Here's a photo of peu d'orange to give you a better idea.

 

Punch biopsies are not always successful and can throw false negatives.  You really need the MRI to get a better idea of what's going on.  Lots of hugs and I hope you can get some answers soon! 

Catmandu

Hollly,  This is almost what mine looks like not quite that pronounced...or at least yet...but it looks like that!  I think this doctor I have is off her rocker!  I mean she is really sweet but I have to find someone more experienced especially after seeing this picture!

HollyinMich

Please, please do find another specialist.  Lots of prayers going your way!

chester2010

You really do need to get another opinion from an IBC specialist who will order an MRI.  You have been far too patient and I can understand you wanting to cry, it's all very frustrating.

Good luck.

Catmandu

I go back to get stitch out from biops in the morning.  I think it looks a little better but still swollen, feels heavy, still discolored but also have bruising but i think its from the biopsy so not sure about this one much, still a little thick appearing right under the nipple, can still see the pores in my skin some too, and have like a pea size knot under my arm now.  Maybe this is just an infection?  I feel like my doctor just did the biopsy to humor me.  I am not sure what I should do?  Should I still insist I need an MRI or should I wait and see if it continues to get better?  I kinda feel like I am being paranoid or making more out of this than I should?  I mean if I have the MRI and it is clear as well, then I am out of the woods so to speak when it comes to the IBC right?  So far aside from the symptoms the only thing with findings was skin thickening on the mammo and US.  Any advice would be very appreciated!

Catmandu

Waiting for them to get approval for my MRI.  In the meantime the swelling, which initially was at the bottom of my breast has spread around to the inside side of my breast and across all the way to the edge of my nipple, still have a little swollen lymph node that is extremely sore as well as extreme soreness along the side next to my underarm.  No more redness though.  I am just not buying that this is some kind of infection that continues to have increase in symptoms versus getting better.  UGH!!!!!  I certainly hope this MRI sheds some light on what is going on.  Not only is this nerve racking but also extremely more uncomfortable everyday!

HollyinMich

Catmandu - I hope the MRI sheds some light on all of this for you too!  I am glad to hear that they are doing the scan, it really should give you some better answers.  Lots of hugs and prayers for you as always!

Holly 

Catmandu

Had the MRI last night and an appointment to get results on Tuesday morning.  Swelling under my arm is worse, redness is a lot better but still looks discolored and the skin is not right.  Having a lot more intermittent stabbing like pain in more places in my breast and under my arm as well as the underarm being really sore.  It just seems like it isn't going away so I hope this MRI helps figure out what is going on.  The pain is really starting to make me crazy!!!!!1

Claudia413

Holly,

As a 4 yr IBC survivor, I want to tell you what a wonderful job you're doing in the IBC Thread on BCO. I came over here to see if I could add anything since I hadn't been here in a while and was pleased to see you here and doing an outstanding job on the advice you're giving.   

Catmandu

Holly is AWESOME!  She helps me keep my head on straight but also realize that I need to pursue this because my symptoms have still not completely gone away!  She is a great person and is in my prayers every night!