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

HollyinMich

Awww, thank you ladies!!  You both really made my day!    Catmandu - I hope you can get your pain under control.  Maybe when you go Tue. to get your MRI results you should ask for a pain med.  I had a lot of pain, quite like the stabbing pain that you described, and asked for Darvocet before they pulled it off the market then had to switch me to Vicodin.  I only took it at night to help me sleep because the pain would make it very uncomfortable and keep me awake.  Maybe a low dose of Vicodin will help.  Praying that you finally get some answers on Tuesday!!  Lots of hugs to you and Claudia413.

Catmandu

Got my MRI results today and it shows skin thickening and increased vascularity and/or flow and an area of enhancement but it is uniform.  They are attributing this to the fact that the doctor did a punch bx 2 weeks ago and to follow clinically.  I had skin thickening on the mammo/us prior to the 1 little bx.  My boss, who is an RN, said that this little spot shouldn't be showing up as skin thickening and thinks I should get a second opinion since the doctor keeps forgetting I am post menopausal (all 4times) and tries to say maybe its cyclic.  I don't know but breast is still very swollen, armpit too, can still see some pores, and stabbing pain in breast, underarm and above and below collarbone, although this area doesn't seem to be swollen or anything.  No redness.  This doctor wanted me to wait 3 months and come back so she can follow me, but to call if anything worsens between now and then.  Why would I go back to her if she isn't going to do anything to figure it out to help me????   UGH!!!!!!!!!!!!!!!!!!!!!!!  So anyway, I did schedule an appointment at a teaching facility and they said I would see an NP but that doctors would review my films, path, and office notes of everything prior and YES they do have experience in recognizing and diagnosing IBC.  I am still hopeful that this is something else, but I have to know what it is and it needs to be treated because it is very uncomfortable. 

HollyinMich

Oh Catmandu, so sorry you're having to go through all of this.  Glad to hear that you are getting a second opinion.  This original doctor sounds like an idiot especially if she can't even remember your menopausal status!

Catmandu

Well my symptoms have progressed some and the bottom of my areola is starting to look very wrinkly and dry looking.  I talked to them at the new doctor I am seeing on Thursday and she said they got all my films and path slides and they are very experienced in looking for IBC so hopefully I will get some real answers in the next week or so!

mrsnjband

So sorry this is taking so long.  Glad that you found another doctor experience in IBC.  I thank God that my breast specialist dx my ibc.  Hoping that this doctor can get to the bottom of this & figure out what is going on. NJ

Claudia413

This is what irritates me so much. None of us should have to go through what we do to get a proper diagnosis.  My heart goes out to you, Catmandu. You are in my thoughts and prayers that you get some real answers and soon. Here's some big (((HUGS))) from a 4-yr survivor and IBC advocate. I take IBC brochures with me when I go for any testing and pass them out to all the techs, nurses, doctors, etc.  It amazes me that so many of them have never even heard of IBC, must less ever seen a case of it.  Sad, very sad.  

SummerLeigh

I also fear IBC (symptoms include swollen breast, protruding vein, "bug bites", rashes that come and go, orange peel like dimpling above areola that seems to be spreading upward every day, peculiar wrinkling, and severe burning and stabbing pain that comes and goes but seems to be getting worse with each day). All I know is that my mammo was clean and my recent ultrsound (that was supposed to be a biopsy) only revealed that my masses are long and at least 5cm in the Lt and 3cm in the Rt. I am scheduled for an MRI guided biopsy of both breasts on Friday, but I was told to call on Tues. and find out if there are any cancellations...every day I have to wait while my symptoms continue is torture. I totally understand what you are going through!! (Btw, I am 30 with 2 small children and a family history of breast cancer on both sides, including an aunt that tested positive for the BRCA2 gene mutation....I am very nervous).

Laura_Jean

Sorry you are going through so much anxiety waiting for results. My mammo showed nithung, onky a little skin thickening and then the MRI showed a 2 by 3 tumor.



Laura jean

Catmandu

SummerLeigh...so sorry you to are going through all of this anxiety as I am.  HUGS to you:)  I continue to have symptoms but they say they aren't positive what is causing it.  Today I woke up with a single dimple in the areola area, so something is progressing obviously.  They may be doing another biopsy after the NP talks to the attending surgeon this week to see what he thinks.  She said she reallly doesn't think it is IBC but is not 100% and their radiologist said I still have thickening but it could also be from the punch bx the other doctor did and yes my lymph node under my arm is a little swollen but he said it otherwise looks normal.  I guess if it keeps progressing then they will eventually figure this out but the waiting is the hardest part.  Knowing and dealing with whatever it is bad or not bad, is easier to deal with than not knowing anything!

Claudia413

Catmandu,

What bothers me is the fact that IBC is highly aggressive. If you do have IBC, it doesn't do any good to have a doctor continue to overlook the symtoms that you have. If I were you, I would insist that they rule out IBC. If you aren't pregnant, aren't breastfeeding and don't have a temperature, you don't have an infection and they should rule out IBC since it is so aggressive. It's nothing to fool around with, believe me. You don't have to have ALL the symptoms to have IBC. I only had one symptom, a slight blotchiness on one breast. It took 6 weeks for me to get a proper diagnosis, but I kept pushing for the needle, punch and skin biopsies that confirmed IBC.

You're in my thoughts and prayers that you finally get a proper diagnosis. 

Catmandu

They want me to wait 3 months and follow up unless something else drastic happens.  She said the dimple is nothing to worry about because I just had more mammograms and an ultrasound(although not in that area) last week and there was no mass and she said because you can only see it when I lay down that it is nothing to worry about.  I have very large breasts and of course the one is bigger too and the dimple smooths out when I stand up but I never had a dimple there or anywhere before.  I don't know what to think.  She said she has seen IBC several times and it would be really bad and red...seriously because I have talked to people on here and seen pictures that have less symptoms than I have had!  I have went to the 2 major places in Nashville so I hope they are right but can't understand why I still have symptoms?  I am surgically post menopausal so it isn't cyclic and I can't be pregnant!  No one can tell me why this is happening!

Laura_Jean

I would continue to pursue this. Certainly you cannot wait 3 months if you are having symptoms that suggest IBC. IBC does not present as a mass in many cases. Mammogram may not be accurate in detecting IBC. My breast was not "bad and red" - just slightly pink with an inverted nipple. Mammo showed nothing, nor did ultrasound. It took an MRI, two skin biopsies, and an MRI guided needle biopsy to find it.

Laura Jean 

Catmandu

Laura Jean....what did your MRI say??  My mammo and us and MRI showed skin thickening in the inner lower quadrant.  Had the mammo and us prior to a single punch bx and when it showed on the MRI as well in the same area, they are trying to say it is because of edema from the bx.  It doesn't make sense to me because it was there prior to the bx as well?  I have some nipple flattening not inverted or retracted but the doctor is saying its fine as long as you can manipulate it and it comes up some even if it isn't the same as it used to be or like the other side.  IDK if I believe there is nothing wrong!  Something obviously is but apparently it is a mystery!

Laura_Jean

My MRI showed a 2 by 3 mm tumor. However, a tumor will not always appear with IBC, sometimes it presents as "sheets" or "nests" rather than a lump which is why it it not always detected.

MRI and ultrasound also showed skin thickening in the lower inner quadrant. I had two skin punch biopsies, one was negative and the other positive, from two different areas of my breast. 

What were the results of the punch biopsy on your skin? Did they take skin from several areas?

Can you find an IBC specialist fairly near you? It sounds like your symptoms may need to be evaluated by someone experienced in IBC diagnosis. If IBC can be ruled out, that would be ideal, but for peace of mind you need to know that it can be ruled out completely. 

I see Dr Cristafanneli at Fox Chase Cancer Center in Philadelphia; they have a IBC center there. MD Anderson in Texas also has one. I am sure there are others in other parts of the country but those are the two that I know of.

Best to you,

Laura Jean 

Claudia413

I heard something about the U of Tennessee having IBC experience. Let me check on that. Also, Dr. Neil Spector at Duke is very knowledgeable about IBC. I'll get back to you on U of Tenn info.