Breast tissue....

angeltam

I went to the Breast Surgeon today and he says he wants an MRI first before doing anymore... he went on to say that most commonly IBC isn't in both breast but when I told him "It's NOT impossible" he said I was right. He went on to say that my swollen lymph-node behind my knee may not be related and is rare... He wants to do an MRI and then the "Core Biopsy" after wards. He also said that the Ultra Sound the other Doctor did shows there is "Breast Tissue" under my arm area.... He didn't even tell me how and I am so confused as to what in the world this means! He said that's why they got me in right away but he needs th MRI first.

PLEASE help me to understand why all the run around and back and forth and why can't he just do a DARN biopsy on what he already sees and knows????

runalot08

I understand your frustration about just doing the biopsy and getting it done.  However, your doc is ordering a test for you that shows so much more detail about the breast.  I know waiting sucks but at least he is going in to learn more about your issues before he cuts.  This way if there are no other spots that show up you can rest assured that he tested all he needed to.  On the other hand if the MRI shows more places then I am assuming he would test them all at once instead of putting you through multiple phases.  Many women want and can not get a MRI.  He sounds as though he is just being very thorough...that is good.  I hope that makes you feel better.

I do not know what the breast tissue under the arm means either.  I am sure some one will pop on and help you out.  Either that or call the doc's office and ask what it meant.  Tell them you are stressed about not understanding it and tell them you would feel better knowing what he meant.

Vickie

angeltam

Thank you very much Vickie... I did call and they said it's "thickening of breast tissue" that's near/under the armpit.

As for him doing the MRI and putting off the Biopsy, I do understand and Thank you for helping me to understand. They are supposed to call me tomorrow and it'll be another "come on in" thing.

I'm just having a hard time because it seems as each day goes by something "new" comes up/happens. I'm getting sharp pains that shoot through my left breast and underarm. I'm just afraid of waiting any longer because my "old" doctor put me off for so long.

Although I know that many people have to wait much longer than my few days. I am very Thankful that I have doctors now that are "getting me in" . I sound so selfish. Just scared though.

I Pray that everyone is doing well here.

Vickie you've been such a help even when you don't know just knowing you "heard me" means a TON right now. Thank you.

rosied51

Oh Angel,I can totally relate to your issues. I am going thru the same thing with the sharp pains from the armpit to the breast, and yes I am baffled also about IBC being in both breast. I had my MRI and all the other tests and now I am trying to get them to see the lite that they need to do a biopsy. At first I only had issues with one breast but now the left one has decided to misbehave as well, it is as red & purple as the right one and the left has significant pain at 1:00o'clock. I spoke with someone here and he also informed me about his wife having her nipples turn white BINGO, Exactly what mine are doing but yet the DR's did not know what to do.I asked permission to print to show my dr's .You are not selfish by no means we need to be our own advocates this is our body we are dealing with. Keep the faith and keep after the Dr's.Now when I go back I have more info for them to read.

ibcspouse

The list of signs and symptoms mentioned in various sources for Inflammatory breast cancer includes the 39 symptoms listed below:

• Breast redness
• Swollen breast
• Warm breast
• Absence of a breast lump - many cases have no breast lump
• Breast lump - a breast lump may or may not be present
• Breast color changes
• Pink breast skin
• Red breast skin
• Purple breast skin
• Pitted breast skin
• Breast heaviness
• Burning breast sensations
• Aching breast
• Increased breast size
• Breast tenderness
• Inverted nipple
• Breast rash
• Itchy breast rash
• Swollen lymph nodes
• Swollen underarm lymph nodes
• Swollen lymph nodes near the collarbone
• Swollen breast
• Breast heaviness
• Red breast
• Pink breast
• Bruised breast
• Tender breast
• Firm breast
• Itchy breast
• Warm feeling in breast
• Breast pain
• Dimpled breast skin
• Thickened breast skin
• Flattened nipple
• Retracted nipple
• Swollen nipple skin
• Crusted nipple skin
• Altered areola color
• Swollen lymph nodes

runalot08

Angel,

I am glad you called and found out what they meant.  I hope it made you feel better knowing what they were talking about.  I always feel better when I know what is going on.  It sounds as though they are talking about your Axilla area. That area is basically from the crease in your arm pit to the top of where your breast starts.  Kind of a triangular area or a tail so to speak. (like if your breast was a comet and the axilla is the tail)  At least that is what it reminded me of on my US.  I had a huge mass there a couple of years ago so that is how I know what it is. It was listed as a Birads of 4 but came back benign.  There are also lymph nodes in that area.  How long were you put off by the other doctors...or how long have your problems been going on? 

You are not selfish and of course you are scared.  All of us here are/ or have been if we really admit it.  We are all here for information, help, friendship, and or encouragement at the very least.  We all have different doctors in different areas of the world and it is amazing how much help just reading posts can do.  Or just to have someone post and say I hear ya!  I hope you get your call tomorrow...let us know.  I have an appt myself tomorrow so hopefully I will find something out on my end too! 

Good luck and Pm if you just need to vent I am here.

Vickie

angeltam

Thanks to everyone first off.

I am waiting on that call telling me to come on in for the MRI.... I read the above "Symptoms" of IBC and can relate to many.

• Redness on both breast (started out on left only small red spot)
• Itchy breast
• Bruises on outer side of breast
• Skin pinched together looking (puckering they called it)
• Skin is severely dry (flaking/scaly looking)
• Swollen lymph nodes
• Achy breast
• Sharp shooting pain in left breast (not all the time comes and goes but daily)
• Sharp pain underarm (armpit) started out on left side now feeling that pain on right side as well
• VERY tender nipples (hurt most when touched)
• Breast look swollen (left side more so)
• Warm to touch

I a just amazed that the other breast person I saw (first mammo) didn't see that this "problem" that I'm having (at the time 1 1/2 inch red, dry, itchy, achy spot on left breast only) but it was clearly on breast only. When it got bigger and the other doctor saw it, he also had no answer for why it is just on breast and the rest of the skin (my whole body) was fine and he didn't see a big deal in it growing. Why aren't more doctors educated in this or to at least check onto it... "Better safe than sorry".

I'm very Thankful for the Doctors that I have now and their pushing to get answers (even if I want them much soon) and calling to just check on me.

I just really want that Biopsy done and no matter what it shows for someone to start some sort of treatment to stop this. It all started a few months ago. I really went in because I was feeling tired and sick and breast ached. I was put on countless antibiotics. When my lymph-nodes started to because slightly swollen and I had a few weeks of night sweats (not every night) my doctor did about 4 Aids/HIV and Mono test, even the lab lady ask WHY is he doing this again and told me I did NOT have any of this and told the doctor there wasn't anymore need to do those test. Things just got worse and the lump behind my right knee came up... thought it was a bakers cyst and after seeing a Orthopedic Doctor I found out it wasn't and that I should get an MRI as soon as I can, my Grandmother passed away and I never was able to go but they did tell my doc that I needed to have it done and my doc NEVER mentioned it until the other day when I "fired" them. So, to answer your question Vickie, it's been going on for months but getting worse and the redness and breast issues have been going on for about 2 months now. Achy breast started before the other symptoms.

I'm praying that you get an answer very soon. As you say "Keep pushing" and as I was told "If you feel something is wrong, you know your body better than anyone, get a second or third or fourth opinion"

Thanks again. Waiting.......

runalot08

Angel,

Keeping my fingers crossed for you that you get your call.  (SOOOOON)

My hubby is going in with me today to my appt as we have many questions.  I have my own copy of my MRI and report and they do not match.  I am not a radiologist. My report says that my breasts are identical and there is nothing wrong with them.  However, me, my hubby, and a friend who is a rad tech. are thinking wait a minute hold on there.  On the MRI my breasts are so obviously different it isn't even funny.  You can see huge masses of almost pure white all around the left breast while the right looks like regular grayish/blk white.  You can even see the bb I feel under my areola.  it is a black circle with white matter inside it.  There are two other places that are odd ovid shapes with matter in them in another spot. It is so crazy.  My friend who is the tech said that she is not saying that it is anything bad and that it is probably just scar tissue but they are different and it is not annotated in the notes. (It should have been she said)  She said it is because what ever is in/around my breast is making it much denser.  Really even magnified you can not see through it. 

It seems that the rad would have at least put "gross amounts of scar tissue present in L breast".  A mention of something.  That is one of the things to present today and ask doc what it is. 

Of course to top it off I was playing Mommy saves the day trying to get my Son's plane out of a tree yesterday and fell trying to get down.  I thing I sprained my ankle...I can walk on my toes but my heel hurts like kdjflksdhoi.  Glad I already have vicodin for my breast. 

Please let us know how the call goes for you and what they say.  Sorry I went off on the all about me. I have been trying to hold in my anger about the MRI but had to tell someone.

Vickie

angeltam

There is NOTHING wrong with you "going on about you"... I am NOT the only person having a hard time or worried and I pray for you and all the other people on here daily.

I hope that they are able to find out what is going on with you as well. ALL of us who have no answer should "keep pushing until we get an answer". It is OUR lives that are on the line and WE ALL deserve an answer and help. Let me know what they say when you get back from your appointment.

As for me... I found a funky hard lump that feels like a sort of line but not straight and a small bb size; I say pea-gravel feel because it has a sort of pointed tip to it. Odd but just another thing to add to my list and believe me I'm writing it ALL down (as you should if you're not already) and it wasn't there the other day.

The MRI... is it going to show under my arm area? I'm just confused as to what all it will show. One nurse said it's a "Breast MRI" and another said Full body.

 At least you "Saved the day" today. <cheering "YEAH">

runalot08

My MRI showed inside of the body, ribs, other stuff (very cool)... the bottom of the breast to the top of the breast and some of the side...if your is like mine it will not get all the way into the arm pit area sorry to say... I wish mine did.

So Doc today says she believes it is a capsule constriction case.  The rads here looked at my disk and did not see anything either...Yeah!  However I got the news that they...(insurance) will not help me.  So I am stuck on this island with my hubby SHC and even though I am in severe pain and costing the bases medical money they wont pay for me to go anywhere and get help.  I was under the impression that they would.  So this is a major blow to the mind.  I have to get myself back to the states and pay to have implants removed...then boob fixed as I am sure it will look like poop.  Wow, as my hubby says we will figure it out and it could be worse.  I am not leaving the site as I am high risk so I will be here to follow you and hope that all goes well and you are getting what you need.  I have been thinking about a prophylactic mastectomy as that was offered to me a little over 4 years ago....the stress as you know is horrible.  Five biopsies in four years is a lot when I really think about it.  Hope all went well for you today....did you get your call.

Let me know,

Vickie

angeltam

I still haven't gotten a call therefore I'm still waiting.......... I have to run to the store today but I just don't want to go anywhere in fear of not being here for that call. As of right now my insurance is going to pay for the MRI but the ONLY place that takes my insurance doesn't have one opening until Friday and I am scared and want in right away; which places me on a "Call list".

I now have bruises on the outer parts of my breast, I have two "purplish spots" on my left breast at the top as well and can feel a few (I may have put this above not sure...) a pea-gravel spot and a oddly shaped thick hard line sort of feeling thing all almost next to one another right above my left breast; both newly felt things.

I'm so very HAPPY for you that things turned out to be b9 and that you know what it is and something is going to be done. I am sorry that you have to wait so long and your insurance won't do it. I don't understand why though because it's a medical issue now they should at least remove them although I know they will not replace them. I'm sorry to hear that you may have to go ahead with the mastectomy. I've heard of women that do that for the "peace of mind". Your husband seems like a wonderful supportive man. Praying something opens up for you so that you can have this surgery done and get over the pain.

angeltam

I'm awaiting a call now from someone at Thompson Cancer Center. Last night I had to take a sleeping pill because I couldn't sleep at all. I'm still having the indentation in the skin (only when pressed) mostly on the left side between shoulder and neck (collarbone) but some on right side as well.  I was told last night that they'd get me into someone this morning and to "try" to relax.

Should I go ahead and ask them for a "PET" and what is the difference between a PET and an MRI?

I'm scared, nervous, mad and confused right now. Thank you Gg08 for the advice last night.

runalot08

Hi I am sorry you had to have help sleeping last night.  As far as PET and MRI go I do not know the major differences or strengths/weaknesses.  I had a CT and MRI.  I know the MRI was better for the breast visualization.  The CT was mainly to make sure there was nothing going on with the implants.  I think the PET scans are the whole body look instead of the MRI just being a Breast MRI.  I would go on the web and put in Breast MRI vs PET.  See if there are any reviews or comparisons. They often list the tests side by side and list the things they can and can not do.

I hope you get your call soon.  We are still figuring out avenues here.  Odd thing last night I woke up and my other breast nipple was hurting.  Go figure.  Oh well may be it is nerve pain from the left shooting over.  So in your picture is that your baby?  He is a cutie.  I remember that age as if it were yesterday.  Sometimes I wish it were yesterday.

Vickie

angeltam

I went for my MRI early yesterday morning. I called the doctor later because my breast had been very sore, my lymph-nodes are sore in my neck and still having that indentation in my skin when I press on it on shoulder/collar bone area. The nurse said that the doctor said that the MRI showed "No, sign of cancer", they are not sending me back to the surgeon (who I saw once but wanted an MRI before biopsy was done) but they were sending me to a dermatologist (making an appointment on Monday they say) and when I ask about the pain, she said if it's that bad go to the ER. I did last night and they treated me with  Keflex through IV for 30min and gave me a prescription (which I picked up) along with some pain medicine. They did blood work and it showed "NO, infection". Can this Mastitis not show up in blood work? I don't understand and I'm so scared. Even if it is this.... it's spreading and hurts. I really am not sure what to think. I am going to see if the dermatologist will do a BIOPSY, especially if the medicine doesn't work.

Any advice as to what to ask and what to do next. B.T.W. I have been on antibiotics 4 times now.

I was told by a  nurse they can't rule it out until they do a biopsy.... 

Vickie, I hope that you get answers as well, praying for you. That is My Grandson "Little Rogers" in the picture with me. He's a sweety and always smiles.

ibcspouse

angel

Ask for a copy of you mri report.  Post the results on the board.  The dermatologist can do a punch bx, the best type bx for IBC. 

angeltam

What is so upsetting is that they were all in a rush to get me to the Breast Surgeon and biopsy the tissue in my breast and now all the sudden after the "Breast MRI" they decide not to... I just think that's odd. I'd love not to have Cancer and for it to be an infection but I WANT to be 100% sure it isn't and get that biopsy. I hear/read all the time how IBC is missed and treated as an infection and it worries me. Heck this is going to be my 5th round of "strong" antibiotics to clear this up and none have worked... praying this one does.

As for a copy of my Breast MRI results, I'll see if I can get those Monday. Thank you all for the advice and support. I'm keeping all of you in my thoughts and prayers as well.

My Grandson is what keeps me smiling. He and my daughter live with me and my boyfriend, it just gives me another reason to PUSH on getting something done.

runalot08

Sorry Angel from the picture you do not look old enough for a grandson!  I hope that the Dermatologist sees you soon.  Any idea on when?  They (Dermatologists) can do skin biopsies also.  Just make sure that they go deep enough to get cells under.  I am not sure how deep they have to go but I have read that others posted that theirs did not go deep enough to get everything they need to look at.  Keflex is a good antibiotic that (I think) is what my surgeon put me on first.  Of course for me just like your previous one it did no good.  I also posted to you on your not diagnosed thread.

Take care and let me know about those appts.

Vickie

angeltam

Yes, I've been on Keflex a few times now and it hasn't helped. I'm praying that this time does, although so far nothing. The pain has gotten worse and I'm still no better, feeling very nauseous all the time and very tired... although that could be nerves or the start of depression because of being put off and not knowing. I'm trying to keep up beat but this consumes my whole life, I can't even be out in public very much because of the shooting pain and itching.

I just want something done SOON. I do not want this to be IBC by all means but I want to be 100% sure it isn't and get an answer and healed.

My left breast is more swollen, even over towards the side and I can tell more because when I try and put my arm down I feel it and have to move my arm back some. SOMETHING is NOT right and I'm tired of being put off.

I just don't understand how the doctor was worried, sent me to a Breast surgeon and ready to do a biopsy right away, said there was thickening, swollen lymph-nodes and saw the puckering under my breast.... but after the MRI she decides there aren't any signs that it's cancer therefore the other "Signs" she was worried about no longer matter.... Just odd.

Thanks again for being here for me and hearing me.

angeltam

Thank you very much.

It would be very worth it because right now I "could" be wasting precious time. My boyfriend and I are both so lost right now.

 I will check into that tomorrow. Is there anyone there I should ask for? 

ibcspouse

Angeltam, My wife's doctor at MD Anderson is Dr. Masimo Christofanilli.  He and another Dr a radiation onc head the Morgan Welch Clinic for Research and treatment of Inflammatory Breast Cancer.  Google his name and you will see his name associatied with many of the papers about IBC.  The other Drs in the clinic are all good.  There is a delightful and smart female Greek Dr that is so very caring.  I wish you good fortune in what ever you decide.  If accepted at MDA you can check on angel fights, to Houston, and the Hospital will give you a list of places to stay.   

zoesma

Please go get a biopsy done,,my friends MD kept putting her off for 4 months telling her it wasnt anything to be alarmed about although she felt something was wrong..she had a U/S and MRI which showed nothing in the early stages..but her breast kept changing and getting more sore and dimpling etc...SHE finally went to a different doctor who sent her in for a biopsy after another inconclusive mammo and she is now DX with IBC..I hope and pray that it is nothing for you but please go somewhere else,,,my friend is now just starting treatment after 4 months of missed diagnosis...

she is kicking herself that she didnt trust her instinct that something was wrong..stand up for yourself,,be a pain to the doctors,,,get what you feel you need,,,

i wish you good luck and strength and hope that everything is fine,,,,

angeltam

I wanted to Thank everyone for your advice. I am going to a Dermatologist this morning at 9:45am. I'm going to speak with him/her about my concerns and my wish for a biopsy that was being pushed for from the start by the doctors themselves and all the sudden forgotten. I'm praying that he'll listen and that things come back B9 and I am treated for whatever infection this may be and if not I'm praying that I can be as strong as all of you and get started on whatever treatment is necessary. 

I just know this has gone on far too long without knowing what "it" is. IF this doesn't help I'll be calling MD Anderson.

God Bless you all and I'll let you know how it went.

angeltam

I went to the Dermatologist who said that he wasn't sure what it was and put me on TEMOVATE 0.05% cream 60grams. I've been using it and it has NOT worked. He said he didn't wouldn't do a biopsy but would send me back to a breast doctor "IF" this medicine doesn't work. I broke down and cried as I walked out.

I went to another surgeon here in Knoxville, who said it doesn't "look" like IBC although it shows most of the signs of it. He did blood work and told me to use the cream and he'd see me next week and "IF" it doesn't work he'd do the biopsy at that point. That leaves me where I was in the first place.

As of this morning I'm still in pain, the pain has gotten worse in the nipples and now I can not raise my right arm up without severe pain and can't put my chin/head down very far (can't touch my chin to my chest) without the same severe pain. I am taking the pain medicine that was given to me although that just cuts down on some pain but by all means do NOT take it away. My breast are still swollen, red, very warm, hurting, itchy and flaky. My lymph-nodes are still ALL swollen and underarms are still getting shooting pain (same as breast). I'm tired and always feel nauseous. Oh and the doctor said that the lymph-nodes under my arms aren't "as" swollen as most females have with cancer, I guess it doesn't matter that they are and have been for awhile now as well as all my other lymph-nodes....

My boyfriend told me that I should call the doctor but I won't, I've almost given up.. I'm going to wait until my appointment next week, unless it gets to where I can't move at all. I'm getting very depressed and I'm not sure where to turn anymore. We don't have the money to get me to MD Anderson and that is just killing my boyfriend right now and I hate seeing him so upset. It isn't his fault.

Praying for you ALL and wishing the best for everyone. GOD Bless. Thanks for all the support.

runalot08

Angel,

Don't give up.  Hold on till your next appt or just call the previous surgeon and demand he/she see you earlier and that you want the biopsy done.  I guess you can just tell them that is what you want and tell them it is time they rule it out.  Say you have done everything their way and now it is time to focus on you.  Remind them about IBC the statistics and need for expediant treatment.  Tell them that yes it may (in your case hoping most likley not) not be IBC but are they really going to sit there in front of you and tell you they will not help you?  They need to rule it out.  Really it is time if nothing else has worked.  Remind them that part of being a Dr. is supporting thier patients...thier needs and wants are to be figured in also. 

Try just going in saying o.k. I have done this and this and this it is now time to do the Biopsy...take care of me.

 Thinking of you do not give up,

Vickie

angeltam

Thank you Vickie.

I am going to wait until my next appointment which is on the 27Th. (next Tuesday) IF it still isn't helping and I AM going to demand a biopsy be done.

I can't understand how a Doctor can go from wanting a "Biopsy" right away... to saying see a Dermatologist. The Breast MRI doesn't always show things and being a "Breast Center" they should know that. I just don't understand any of this. I do NOT want cancer at all but I DO want it ruled out, if possible.

How are you doing? I pray things are going well for you.

ibcspouse

Angel, sorry for all your problems and pain.  There are 2 suggestions, one ask the Dr to order blood work and check for ca 27, 29, the tumur maker that is indicative of invasive breast cancer including IBC.  It should be below 38.  It is not an absolute answer, sometimes it is posible to have bc with the markers elevated.  Most of the time the marker will be high if you have IBC.

The other suggestion is ask your Dr to call Dr. Christofanilli at MD Anderson.  He does take calls from Dr. about cases.  I B C  treatment and research is all he does.  He is generally considered the world;s leading expert. 

Another thing you might want to do is go online to . http://www.ibcsupport.org/  join and ask question if any of the ladies there have a Dr in Knoxville or nearby that they have had good luck with.  The group is several hundred IBC women from the just dx to the 2 decade survivors.  The ladies here are great, it is just you may be able find someone from Knoxville of that site. 

angeltam

Thank you ibcspouse. I will go to that group and ask if anyone knows of any "good" doctors here in Knoxville that I could go to. I just want to rule it out 100% . I think I'd be able to sleep better and handle a wait in figuring out what in the world is wrong if I could just rule out cancer. If it's not sure it'll still feel awful but at least I'll know the wait isn't going to potentially kill me.

Again I APPRECIATE EVERYONE's help/advice/support. I don't really have anyone here besides my boyfriend who is feeling just as helpless and bewildered as I am.

You are all in my thoughts and prayers.

angeltam

I'm just waiting for my appointment next week, I'm not calling about anything new and going to do all I can to not shout at the doctor when I do see him. I WILL tell him about Dr. Christofanilli and ask him to put my mind at ease and do the biopsy, if nothing else to prove me wrong about worrying that I might have cancer.

I know lumps are abnormal when they are hard but I'm feeling a "balloon" like (it feels as if it's inflated with water/air or something when I press it) oblong shape under/next to my right nipple staying within the areola area. I also feel what to me feels like a ton of very tiny little bb's all bunched together on the inner side of the breast. My skin on the outside of the right breast has that orange peel feel although to look at it you couldn't see it but can see the red swelling and feel the warmth. It also feels as if on that same side has some scabbing (rough sort of feel to the skin near the areola and into that area a little).

I'm praying for all of you and appreciate all your thoughts and prayers.

angeltam

Thank you Gg08 for the information. I am going to make sure when I go for my appointment everything I've went through "Symptom wise" is written down and I am also going to print out some information from that Anderson Hospital in Huston. He says it's not found in BOTH breast but as I've read "IT CAN BE", sure it's not the "norm" but it's NOT impossible. I don't wish to tell the doctor/surgeon that he isn't doing his job or doesn't know what he is doing but I do want to make him aware that it could be and I NEED that biopsy or skin and tissue done ASAP.

I just want to know something no matter what it is, I don't even care at this point if it's "bad" news cause from where I stand it's bad right now. I'm in pain daily and it's NOT getting better but worse the more time that goes by.

If some of these doctors could just look beyond the "text book" and run test they might find something that could be treated faster and may be able to help add some years to my or someone else's life.

Sorry to go on and on. Thank you all for allowing me to vent.

My thoughts and prayers are with you all as well.

ibcspouse

Angel

Have you tried the UT Medical Center in Knoxville.

The number for an appointment is Call 1.877.UT.CARES (1.877.882.2737) to make an appointment.  They have done some work with IBC. 

angeltam

Ibcspouse thats for the information.

I'm going to the new Breast Surgeon that I have an appointment with, he does work with Thompson Cancer Center.

What started out a "oblong balloon" feeling on one area has turned into many on my breast. Took pain medicine last night because it got too bad, pains medicine isn't helping as much anymore.

I'll get some sort of answer this week if I have to go in there and sit until someone hear, listens and see's me.

I've lost a great job because of this, although I'm told I can come back "when" this is taken care of. I am not letting another doctor put me off.

I'm so glad I found this site and you all. Thinking of you and praying for you ALL daily.