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COULD I HAVE IBC?

By Briansmom444 Tuesday, August 04, 2009

Hi,

I had a routine MRI   (JUNE 26th 2009)  of the breasts.  My Dr ordered it because I had a sono show intramammory Lymph node & I wanted to be certain. Surprisingly, there were findings.
After Contrast was administered, increased vascularity & edema were noted in the lower inner aspect of the right breast  mild adjacent non mass like enhancement..

Kinetic analysis shows moderate persistant enhancemant.

Otherwise no other evidence of abnormal enhancement or morphologically suspicious lesions. (The lymph node I questioned from the sono DID NOT even show).

I was adviced to get a surgical/clinical evaluation for inflamatory disease.
Short term F/u in 3 mo's.
Birads 3

The area was noted as 2.4 Cm X 1.5.

5 months prior, normal Mamo.
3 weeks prior, normal sono (Only normal appearing intramamory lymph node)

I saw 2 Breast specialists who ruled out IBC (Inflamatory breast cancer) because I do NOT have clinical symptoms. But I am still wondering if this could be the beginning of IBC. Maybe the symptoms have yet to blossom from within, so to speak.  Im concerned symptoms will begin to manifest.

I measured the area as marked on the MRI report (the distance this area was from the nipple) & I have a obvious  mild puffiness there.  My right breast is about an inch bigger than the left (SLIGHTLY firmer) but of course now IM LOOKING ALL DAY.........I noticed this after getting my MRI report as I never looked before.  Why would I? :-(   Both breast surgeons thought the report was "Unimpressive". (Still suggesting IBC is a CLINICAL diagnosis & I would have redness, warmth, bruises, ect).  Not just a slightly enlarged breast, which they say is the "rule" not the exception.   Im afraid more symptoms will shortly come.

I asked if I should have a MRI guided biopsy  of the enhanced area & both surgeons said no?

It is now almost 6 weeks since the MRI & I haven't noticed any other symptoms...........Would something else have appeared by now? 

I am 38.........Can you help me understand?

 

Should I still be concerned

Also is a birads 3 Breast Mri typically 3 mos?

Please let me know all you can!
THX

Blessings!

Phyllis Johnson, Health Guide
8/ 4/09 9:51pm

I'm an inflammatory breast cancer survivor, and I'm familiar with the usual onset of the disease.  For now, it makes sense to follow the recommendations of your doctors.  One major feature of inflammatory breast cancer (IBC) is that symptoms usually develop rapidly (within weeks, not months).  If your puffiness is an early IBC symptom, the redness and other symptoms will probably soon follow.  Keep in touch with your doctors and let them know if you develop additional symptoms.  One problem with IBC diagnosis is that there is a wide variation in presenting symptoms, so continue to monitor the situation and, if you see progression in your symptoms, consider asking about whether a biopsy would be advisable.  You can read more about inflammatory breast cancer at this link.  

8/ 4/09 10:22pm

Thx so much for your response. Im wondering at what point can I elliminate the IBC Thought & finally say, it just cant be.  Im so sick with worry over this, as Im sure you can understand.

 

I keep thinking, if I can just hit 9/10 weeks from the MRI, then I can probably start to think its not ibc?

 

All three Dr's were pretty Absolute positive that IBC would have "exploded" as one said. These are top notch Breast surgeons (not that it means much) but I read different things.  

 

What were your symptoms if you dont mind?  You say that symptoms manifest in weeks not months?

 

Im confused & people are telling me 'You've seen 3 Surgeons who ALL say the same thing"!!  I just wonder how much they really know & I honestly dont remember my breast being bigger (Even if it is slight).

 

How much is a breast cup size. I thought it was only an inch.  In the articles, they say your breast can increase an "entire" (if its an inch, thats not too much bigger) cup size?

 

Does it sound like IBC?

 

Thx & Bless you for your dedication in helping others~~

Phyllis Johnson, Health Guide
8/ 5/09 9:15am

It was about six weeks from my first symptom (pain and tenderness) to the morning I woke up to an angry-looking red/purple dimpled quadrant of my breast.  You can read the details of my diagnosis in a sharepost I wrote at this link.  I know other women who go from a breast that looks perfectly normal to a red, rock-hard swollen breast over night.  Still other women have symptoms that are more subtle.

 

When can you relax about this?  I don't know.  I'd recommend trying to start now and trust your doctors' opinions.  As I read your letter, it seems that you have two concerns right now:  an area that looks different on an MRI, and one breast that is larger than the other and a bit puffy.

 

About the MRI--you need to know that MRI's can have false positives.  One disadvantage of all of our modern screening tools is that they show all the little anomalies that happen in perfectly healthy people--anomalies that we used to never know about because no one was peering into our bodies with technology.  When your doctors do the next MRI, they'll be able to compare and look for changes that will give a better idea of what is going on.

 

It is very common for women to have breasts that are different sizes.  I don't know what the measurements for cup sizes are.  Notice any difference between the way your bras used to fit and how they fit now.  What happens to most women is that a bra that used to be comfortable is now WAY too tight on one side, or even impossible to wear because of the swelling on one side.

 

I wish I could tell you that there is no way this could possibly be IBC, but I've read hundreds of stories of women with IBC, and have learned that it is a very sneaky disease.  At this time, you don't have typical IBC symptoms.  The next MRI should give your doctors more information.  I would recommend that you try to live on the assumption that this is not a serious medical matter.  You have been seen by top-notch doctors who are watching your situation.  If new symptoms develop, then go from there.

 

About a year after I finished my IBC treatment, I developed pain and itching in my left breast similar to my initial symptoms on the right side.  Imaging tests showed nothing, but I didn't find that reassuring.  Imaging tests didn't find my IBC either.  Only the passage of time convinced me that I didn't have IBC again.  What caused my pain and itching?  I have no idea, and neither do my doctors.  Sometimes perfectly healthy people have unexplained symptoms.

 

Worry can accomplish nothing helpful.  Stay busy and try to put aside your concerns about this for now.  I hope the next MRI brings you good news.

8/ 5/09 11:18am

Dear Phyllis,

 

Thank you very much for your time in responding. I do appreciate your thoughts & suggestions..........Im sorry you've had to deal with this horrific disease & happy to see you are doing well.

 

The thought petrifies me & while Im trying to get through each day, I just cant stop looking in the mirror, feeling my breast, checking for new symptoms. Its really sad & sick.

 

Im very confused right now.........So many thoughts,  Is the next MRI going to show more enhancement, a tumor?  Will more symptoms come on soon?  Should I just Get that area biopsied thru a MRI guide?

 

I cant think straight now but wanted to Thank you,

 

Blessings

Phyllis Johnson, Health Guide
8/ 5/09 12:31pm

This article by PJ Hamel on fear may help you.  I'd also suggest that you check for changes in your breast no more than once a week.  One of my doctors explained that daily breast checks are counterproductive because then the changes are so gradual that we can't see them.  If there is a huge, dramatic change, you'll notice it when you shower.  The chances that you have IBC are extremely small.  To begin with IBC itself is rare.  Secondly, you don't have typical IBC symptoms.  Finally, several competent doctors concur that this is not IBC.

Anonymous
Rhonda
8/23/10 8:09pm

Hi. Back at the end of June my left breast swelled upI only noticed it because of my clothes. 4 days later green stuff was coming out of my nipple. Had a mammo and ultrasound they said it was just an infection. Still very uncomfortable and my left breast is bigger and the aerola and nipple are larger and pale in color.  the discomfort goes up into my collarbone and armpit.  I seena breast specialist and she said that the nipple is kind of retracting.  But, that I should just keep an eye on it.  How long do I wait?  My husband can see the difference also.  Should I just let it go or what does anybody out there think?

Phyllis Johnson, Health Guide
8/23/10 8:29pm

If you have already had an antibiotic and if it didn't help the swelling, then it is time to be assertive about asking for imaging tests like a mammogram, ultrasound, and/or a MRI depending on your age.  You should also inquire about having a biopsy unless the imaging tests clearly show a benign condition like a cyst.  If the doctor said that you have an infection, but didn't give you an antibiotic, then trying that first before a biopsy is a reasonable step to take.  Be sure to let the doctor know that your condition is getting worse, not better.  Most of the time, symptoms that look like an infection are an infection, but sometimes swelling and redness can be symptoms of a type of breast cancer called inflammatory breast cancer.

Anonymous
Rhonda
8/23/10 9:42pm

Sorry, I forgot to mention I was on a antibiotic.  Although the green goo stopped and the breast isn't as swolen it still is irratated an different looking the main thing is the constant pressure in breast, collarbone and armpit.  I really get irratated wearing a bra unless it is a sports bra.  Also how does one get a breast infection?  I don't have piercings and my children are way past the age to breastfeed.  Does it just happen(infection).

Phyllis Johnson, Health Guide
8/24/10 5:39am

Rhonda, although breast infections are more common in lactating women, they can happen at other ages.  Although cancer can be one cause for breast swelling and nipple discharge, it does not usually respond to antibiotics.  (I would say never, but I know some people whose cancer symptoms improved temporarily while on an antibiotic.)  You may find this article on breast pain helpful.  What concerns me about your description is that your symptoms are spreading from the breast up into your armpit and collarbone.  The swelling could be pressing on a nerve, or lymph nodes in your armpit and under your collarbone might be swelling as they try to fight the infection.  I'm not a doctor, so I'm sure there could be all kinds of other causes for your symptoms that I don't know about.  When the doctor asked you to keep an eye on this, she probably intended for you to call back if the symptoms didn't go away or got worse.  It's nearing the end of August and your symptoms started in June, so it seems to me that it's time to see the doctor again.  If you haven't had an ultrasound or mammogram yet, ask about whether those might provide some answers. 

Anonymous
Rhonda
8/24/10 10:44am

Thank you very much.  I will reschedule and we will see what is going on.Wink

8/14/09 2:27am

I HAD BREAST CANCER 9 YEARS AGO, MY LYMPH NODE WERE CHECK WITH THE BLUE DYE, AND WERE ALL CLEAR. ABOUT 9 MOS LATER , I HAD A COUGH, AND THEY GAVE ME A CAT AND FOUND A LYMPH NODE THAT DIDN'T LOOK RIGHT.  SO I HAD  A MRI GUIDED BIAPSY, IT WAS CANCER.. MY DOCTOR, SAID IT WAS GOOD WE FOUND IT AND THAYTOOK CARE OF IT. I HAD 4 ROUNDS OF CHEMO. THAT WAS 8 YEARS AGO AND I FEEL GREAT. GOD ,HAS BEEN GOOD TO ME. GOD BLESS YOU AND GOOD LUCK MISTY

Phyllis Johnson, Health Guide
8/14/09 6:11am

Congratulations on your 8 years survival.  Your story points up the importance of letting our doctors know about symptoms we have after we finish treatment.  Thanks for sharing it.

Anonymous
Anonymous
8/18/09 12:38pm

Thank you for your replies.

 

I would like to know, if redness is almost always present with IBC? If not where would the biopsy be done?  I feel like my right breast is fuller & if I squeaze its got firmer tissue than my left. My left breast feels  mushier.

 

I still (thank God) do not have any other symptoms but Im trying to figure out if my fullness is edema. 

Would edema make my breast appear higher  & make it feel hard like an inplant? (Standing straight up).

 

What does Edema look like? (Is the peau de orange sp?) the Edema??  Or is Peau De Orange something else?

 

 

Thx

Blessings

 

 

Phyllis Johnson, Health Guide
8/19/09 3:19am

Edema is a medical word for swelling.  When you've been on your feet all day in the summer and it's hard to get your shoes back on, a doctor would say you have edema in your feet.  The amount of edema an IBC patient has can vary quite a bit from one patient to another, from merely puffy to rock hard.  The pitting on the skin of the breast happens because the swelling isn't uniform, leaving little dimples that look like the texture of the skin of an orange.  I'm not a doctor, and the only case of IBC I've seen with my own eyes was my own.  I have participated in a mailing support list for IBC folks, and I've read hundreds of women's stories of their own diagnosis.  The only ones I remember who don't report a change in skin color are women whose skin is naturally so brown or black that a change doesn't show.  Although most women with IBC don't have a lump that shows on a mammogram, most do show some changes in symmetry, breast density, or skin changes from previous images on their mammogram.  The surgeon biopsies in the center of the changed area or does a series of core biopsies in different parts of the breast.  For an IBC diagnosis, it's important for the biopsy to include skin samples because by definition, IBC is breast cancer cells in the lymphatic vessels of the skin of the breast.  If your right breast has changed, work with your doctor to find out the cause.  There are plenty of benign reasons a breast could change, so try not to worry.

8/20/09 12:23pm
Thx again Phyllis (You are too kind) & Misty, Thank you for your info as well. Glad you are doing well! Phyllis........In Your humble opinion, based on what you do know If I had the MRI On June 26th ( 8 weeks ago) noticed my breast was larger, puffier (I dont know what to call it) 6 weeks ago, would more symptoms have starting showing up by now? I dont know if Im naive in thinking that after 4 more weeks, I should put this asside because if this is so aggresive, would I not have had redness and inflamation by NOW (Or after 4 more weeks from now). Does this make sense? I know nothing Dramatically has changed since the MRI. Yes, I do feel its definately larger (By an inch) Only because I'm crazy enough to have been measuring it. That was 8 weeks ago. 8 weeks later, Would it not have been 2 inches bigger than my left & by now, something else seen? I actually went to ANOTHER specialist (SO far 5)!! Yesturday, I said, Im going to try one more DR. I went to a "Biopsy happy" breast surgeon (not saying hes bad) He actually has a good reputation, here in Manhattan but I Know he is easy to do biopsys. He looked at the MRI report & said, I dont know what to make of it but IBC is not found on Routine MRI. You either have it or you don't. There is no Pre-curser. Yes, you can see it, if symtoms are present, perhaps, but you dont find it & then wait for symptoms to come. Sounded a bit logical.....**Sigh** I asked why my breast feels firmer than the left. He said Its a different breast. He said, IBC is ugly & obvious & doesn't come on a bit at a time. Another sigh. He clearly looked at me & said, Ive been doing this for 45 years & you dont have IBC. Go out & enjoy your life. (I felt good) Then he said, IF anything else should change, call me, UGHH....... He recomended a routine mammo & U/S (Is that to look for IBC) but said to wait for my yearly (In Jan). SAid insurance wont pay, when I questioned should I do it now). I know he can put it as a diagnostic but I think I was doubting him so much because he said, IF you do not feel comfortable, please get a 2nd oppinion..........Little did he know I had already had 4. (I didn't mention that). He said its not necessary to go back for another MRI? I asked about doing random biopsies & he said there is nothing to biopsy. He made a comment, I wasn't happy with and said, at my age, there is no cure. (IM 39) I didn't like that. So with all this said.........Yes, Im still looking in the mirror to see if there is redness. I think from what I now know, this is the Hallmark of IBC. He said IBC is ugly & Obvious~ I will still have the MRI done anyhow but in a sense........this dr sounds reasonable. If I have the mRI & they find IBC, I would have skin involvement. Your time is valueble but if you get time, your thoughts are welcomed. IF NOT, I CERTAINLY understand & still appreciate all you've already done! By the way, what is Inflammation? Is it like an infection? Do the websites pictures show "typical" IBC. I hear they are pretty dramatic. God Bless! Rachel
Phyllis Johnson, Health Guide
8/20/09 10:31pm

If five doctors have told you that you do not have IBC, I don't know anything I could add. You have done what you can for now.   

Anonymous
Anonymous
8/21/09 8:24am

Thank you Phyllis,

 

 

I suppose you are right. What else  can I do?  I 'll continue to pray that this is not the beginning & hope time will prove this to be true,

 

TY so very much for your help.

Anonymous
Anonymous
8/24/09 5:56pm

Sorry to bother you Phyllis, (Really I am)

 

Just wanted to ask you a quickie. One Dr said dont repeat the MRI but the others said to repeat it. If I do repeat it, do you have any clue what they'd be looking for? Is it IBC? 

 

Im soooo confused & depressed now,  Cry   I havent eaten/slept. One Dr said something that keeps making me wonder. He said that we dont know how IBC looks before it shows on the skin so it is possible that symptoms can still show in due time!! ??  I called him yesturday & asked him if that puffy area that I can see on my breast (The same area that is noted on the MRI) hasnt changed since the MRI on June 26th (9 weeks ago) then can I feel relieved that its probably nothing. He said no, not necessarily. It doesnt always show on the skin so quick?  He now has me going for a diagnostic Mammo.

 

Do you have any advise? Im ready to take the entire breast off & let them tear it apart looking for IBC!!!

Anonymous
Anonymous
8/28/09 3:42pm

Hi,

 

I haven't heard from anyone.........Wondering if my messages are posting?

 

My latest update. The surgeon spoke to the radiologist & told her that he did not note any clinical symptoms at all on my breast. He asked her what she wanted. She said I should get an MRI guided biopsy of the area. I would think, she'd say just wait so im puzzled.

 

Can she be looking for IBC?? Even knowing I have no symptoms. (Still cant understand why the report said to rule out IBC from a non masslike enhancement)?

 

Is it possible to have IBC w/out clinical proof?

 

Its been 9 weeks & nothing has changed.......Is it possibly or likely?

 

I had a diagnostic mammo to compare to my last one from Jan & there were no changes.

 

Does ANYONE know when I can rule out IBC?

 

Anybody out there!??

THX

6/24/10 2:40am

I can't believe that your story matches mine so much. Am going extremely crazy here since 4 months about changes happening to my left breast. First it was very slight pigmentation change only( darkish shade) , then later prickly , burning or painful feeling in the breast ( on and off for a while). Next I noticed my left breast is slowly getting bigger in size than the right one. I got MRI and punch biopsy done, all are negative. I went to 1 surgeon and 2 onco docs, they dont know why this is happening and believe in test results. They want me to wait and watch until something more shows up like red ,hot etc..

Everyday in the morning I wake up in fear watching for something on my breast and everytime I feel pain or slight itch I go mad. I dont know for how long I should/can live my life in this manner.

 

plzz keep updating about yourself which might help me.I will also appreciate your thoughts and advice on this.

Thanks.

PJ Hamel, Health Guide
6/24/10 6:14am

Hi - Why worry and wonder? See a breast specialist. Breast specialists are usually found at cancer centers (even though they deal with ALL breast issues, not just cancer); and the best cancer centers are Comprehensive Cancer Centers. If you're near one of these cancer centers, see if your doctor can give you a referral, OK? No sense waiting and worrying when you can take some positive action. Good luck - PJH

6/24/10 12:43pm

Thanks for reply. Like mentioned in the earlier message, I am already seeing a breast surgeon/specialist and saw 2 other oncologist specializing in breast cancer. And I also got all the test done, the biopsy and MRI. Plzz read my previous message pasted below

 

Any opinions from anybody will be appraciated greatly.

 

My previous/earlier message

"

I can't believe that your story matches mine so much. Am going extremely crazy here since 4 months about changes happening to my left breast. First it was very slight pigmentation change only( darkish shade) , then later prickly , burning or painful feeling in the breast ( on and off for a while). Next I noticed my left breast is slowly getting bigger in size than the right one. I got MRI and punch biopsy done, all are negative. I went to 1 surgeon and 2 onco docs, they dont know why this is happening and believe in test results. They want me to wait and watch until something more shows up like red ,hot etc..

Everyday in the morning I wake up in fear watching for something on my breast and everytime I feel pain or slight itch I go mad. I dont know for how long I should/can live my life in this manner.

 

plzz keep updating about yourself which might help me.I will also appreciate your thoughts and advice on this.

Thanks."

PJ Hamel, Health Guide
6/24/10 2:02pm

I don't see the mention of a "breast specialist" in your first post - I see "breast surgeon." There's a difference; there are doctors who specialize only in breast issues. Have you seen one of them? - PJH

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By Briansmom444— Last Modified: 10/26/11, First Published: 08/04/09