Could it be IBC??

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Julesz
Julesz Member Posts: 10
I just turned 36 years old two days ago, April 25, 2010. In February of this year I started to have a horrible itching on my left aerola and nipple. The skin in the area became a bit inflammed and scaly. I went to the doctor and she prescribed lotrisone lotion, ordered an ultrasound and referred me to a dermatologist  It was March when I had the ultrasound done, the results came back negative but by then i was starting to feel a little pain. Two days after the ultrasound I notice my axillia area, my breast, my chest all the way to my clavicle is swollen and in pain. I saw the dermatologist in April and she notices the skin around the aerola and nipple seems normal (the lotion did help the scaliness). But she then feels my swollen areas and tells me she can't do a biopsy because there is no rash but that i need to be checked for malignant breast tissue.

I finally get back to my doctor it is now the END OF APRIL. It was difficult getting her to actually listen and see my physical changes. Once she examines me she said that my breast are definitely asymmetrical and there is definite swelling.  I asked for an MRI but my insurance denied it because of the way the doctor requested it.

I have been in a lot of pain and discomfort and don't know what this could be. I went to the ER and they said they couldn't run tests that it had to be done thru a specialist. They confirmed there was no infection but that my axilla lymph nodes are a tiny be swollen. 

The itching has come back, just not as bad as before but it seems to be all over the breast now.  There is still swelling but no redness. The pain is constant and worse at night. The breast is definitely larger than the right one. Raising my arm is uncomfortable and holding it close to my body is also uncomfortable, I can feel the swelling in my armpit.

I am now going to see an oncologist MAY 5TH.

Is it possible to have IBC without the redness or orange peel skin?

Any advice or stories shared are very much appreciated!! I'm very worried.

Thank you,

Julesz

Comments

  • leisaparis
    leisaparis Member Posts: 587
    edited April 2010

    Yes, It is very possible to have IBC without the redness & orange peel skin. I myself had almost all the symptoms, but many of the women on here had just one or two. To find out for sure, you need to have a punch biopsy done. It's the only way to tell. IBC does not show up on mamograms or sonograms. If your regular dr. will not do it find another one who will. IBC is nothing to fool around with, it is very aggressive and you have to be aggressive to fight it. Good Luck and here's to hoping you do not have to join our little group. However if you do, this is the place to be. The women on here are very helpful and can answer almost any question you may have. Best wishes and God Bless.  Leisa

  • Julesz
    Julesz Member Posts: 10
    edited April 2010

    Dear Leisa,

     Thank you so much for your response and support. It helps a lot. My regular doctor basically washed her hands of me and had her nurse call me to say "have the oncologists take care of everything and run the tests, good luck bye" literally like that.

    Needless to say I'm changing doctors. I see my oncologist on Wednesday, one whole week from today and the anxiety of not knowing is driving me mad.

    I hope all turns out for the best but if not, I do see that there is a GREAT support team on this site.

    Blessing to you,

  • ibcmets
    ibcmets Member Posts: 4,286
    edited April 2010

    Julesz,

    Glad you're going in soon.  I had to wait 3 weeks for an appoitment; but once I had mamo & ultrasound that showed suspicions of ibc; the rest of my tests were done immediately.  Yes, you will most likely need a punch biopsy to detect.  Good Luck.

    Terri

  • trishh
    trishh Member Posts: 5
    edited May 2010

    I am having similar problems with the breast surgeon.  I have swelling and constant pain and was told since i don't have a rash or it is probably not ibc.  The insurance company denied my breast mri and now I am still in pain and swollen and going to appeal the insurance desicion.   however, I am going to my pcp on wed and insist that i get this ruled out wether the insurance is going to cover it or not.  it means more to me, my husband and kids to rule out or confirm it than it does to them because "the odds are in my favor" (their words).  But i was wondering if they could do a punch biopsy even though there is no rash.  my breast surgeon said there is no where to biopsy without a lump or rash.... I think i need to get a second opinion from a nother breast surgeon...  can you get it biopsied without a rash?/

    Trish

  • leisaparis
    leisaparis Member Posts: 587
    edited May 2010

    Most definately, I had no rash or lump. They biopsied the node under my arm, a spot where there was a suspicious mass and 2 places on the skin itself.

  • Julesz
    Julesz Member Posts: 10
    edited May 2010

    UPDATE:

     I finally went to see the oncologist. He said he highly doubts its IBC because my breast isn't red or swollen enough. Undecided

    He ordered an ultrasound and a mammo to be done. I got them done the same day and the techs told me all they could see was that I have fibro cystic ... and that there was nothing showing that would strike up any major concerns.

    I have to pick up my results and images and take them back to the oncologist on May 19th. 

    I'm still worried, hearing the oncologist say he highly doubted it was cancer gave me some relief but I still would like to be tested for IBC.

    The symptoms haven't changed much, I have noticed now that if I rest I'm not in too much pain but physical activity causes me to have more pain. I'm also now getting shooting/lightening bolt like stabbing pains into my nipple that lasts about 20 seconds or so and then it gets a little itchy as well. The stabbing pains are random but have been occurring for about 3 days now.

    Does anyone with IBC ever experience days in which the symptoms are not as bothersome or noticeable?

    Thank you all!!!

    Julesz 

    Does this happen to any of you?

  • leisaparis
    leisaparis Member Posts: 587
    edited May 2010

    I most  definately have. I also had the sharp shooting pains. Felt like someone was taking a knife, shoving it in and then twisting it. Didn't last long thank god, 30-40 seconds. Lasted @ a week or so. Would stop me in my tracks though. I had more pain when I did physical activity. I do have IBC, and this was one of my symptoms. I'm not saying that you have IBC, but I would ask for a biopsy to be safe. That's the only way to rule it out. Not everyone has all the symptoms and not everyones symptoms are the same. Don't let them just drop the ball. It's you who has to be your own advicate. Good Luck. Leisa

  • Julesz
    Julesz Member Posts: 10
    edited May 2010

    Hello all,

     I received my results back to day from the ultrasound and mammo. They say no mass or cysts were found but the mammo does say "moderately dense heterogenous fibroglandular pattern noted"  I'm assuming this means my breast tissue is a bit dense. Has anyone had a mammo result with the same statement?

    Hope everyone has had a great week!

    Huggz and Blessings to all!

  • Julesz
    Julesz Member Posts: 10
    edited May 2010

    Thank you Leisa.

    I just sometimes feel like I must be going insane with all the unusual changes.

  • sandyrinaz
    sandyrinaz Member Posts: 3
    edited May 2010

    I am worried and frustrated and just need some reassurance, I think.  On March 28 of this year I noticed that I was experiencing spontaneous bloody discharge from my right nipple.  I nearly panicked because in 2006 I was diagnosed with invasive mucinous cancer in my left breast.  I had mastectomy with sentinel lymph node biopsy followed by chemotherapy.  So....you can imagine my fear when I saw blood coming from my remaining breast.

     I had a mammogram (showed no suspicious areas, ultrasound (showed small cyst that surgeon was not concerned about)  and finally on April 11th removal of ducts and biopsy showing no cancerous cells and some ectasia. (think I spelled that correctly)  About a week and a half later I noticed redness around my areola but no redness or swelling where the surgical wound itself is/was (the wound itself has healed nicely).  My surgeon put me on a week of antibiotic and told me to return in two weeks if the area is still red.  Well, it is still red and I am experiencing some pain in the area opposite the surgical site and swollen glands under my arm.  I feel like a hypochondriac, but I am just so worried that this might be IBC.  My surgeon was just so unconcerned and certainly not in a hurry to do follow up. He says that he could insert a needle to drain fluid as the next course of action to resolve the redness.  Am I on the right track here?  Should I just trust that my surgeon knows best?  I am very concerned. 

  • sandyrinaz
    sandyrinaz Member Posts: 3
    edited May 2010

    Hi Bonnie,

     Thank you for your reply.  My surgeon did an incisional biopsy when he removed ducts from my nipple because I was experiencing bloody discharge from my nipple.  That biopsy, done on April 11th, came back with a report of no cancer cells present, evidence of ductal ectasia (I don't have the report in front of me but I think I'm spelling that correctly).  At the time of  out patient surgery I was given i.v. antibiotic to prevent infection and went home with minimal discomfort.  Steri stitches dissolved in about a week and about four days later I noticed the redness.  My surgeon put me on the oral antibiotic and as of today I still have the redness.This is over a month after the biopsy.  My surgeon is not especially worried about this, but says he can insert a needle to drain fluid and he thinks that will relieve the inflammation.  I have some shooting pain in my  breast on the other side of the surgical site off and on and some tenderness and swelling under my right arm and pain that radiates into my shoulder blade intermittently.  My worry is that since he just biopsied that one spot, how can they know for sure that I don't have cancer in some other area in that breast?  

    I have a history of invasive breast cancer in the other breast. Considering my recent history of breast cancer in the other breast,  I sort of feel he is just taking a very laid back approach to my symptoms in the right breast. (I had complained about a lump in the other breast for over a year before any one took me seriously and even after two biopsies on that breast my surgeon was sure I did not have cancer) .....I did.  Stage 2 invasive mucinous cancer.  SO I am worried about this other breast.  I want the dr. to be aggressive.  How can it hurt to be aggressive?  I  live about 200 miles from Phoenix but I am going to geet a second opinion. Is there a website for AIBH?  I was thinking about getting worked up at Mayo Clinic...I just want to get this taken care of  like yesterday! Surprised  sandy (0:

  • sandyrinaz
    sandyrinaz Member Posts: 3
    edited May 2010

    Thanks Bonnie.  I called AIBH and want to say first off, I was very impressed with how compassionate and helpful the woman answering the phone was for me.  Because I don't have a diagnosis of cancer in the right breast, AIBH can't help me as far as a second opinion, but I was given the name and phone number of a breast surgeon in Scottsdale who she highly recommended I see for a consult.  Have you heard of Dr. Lice (pronounced Leese) Walker in Phoenix?

    I do have an appointment tomorrow with my surgeon here who did the ductal removal and biopsy regarding the continuing redness and pain.  As I've said, he mentioned that if the redness did not go away he would insert a needle and drain fluid from the area.  I will insist that any fluid removed be sent to pathology or he may as as well not do the procedure. I have concerns about him knowing where to put that needle without a lump and only redness to go by.  I guess that is a question I will have to ask him and hope I get a satisfactory answer, meaning I understand what he is saying and that it makes sense to me. 

     I also have a very small cyst in a different area of my breast that I want him to aspirate.(he has told me he doesn't feel that is necessary, but that he will do it).  I doubt either of these procedures will be done tomorrow as I know the cyst aspiration requires equipment (ultrasound) he doesn't have in his office and, for my own comfort, I am going to insist upon i.v. sedation.  I.V. sedation has to be done under the care of an anesthesiologist so will have to be done in out patient surgery.  I do not want to feel any pain, discomfort or anxiety  during the procedure at all and after all I've been through with surgeries and chemo, I don't think that is unreasonable.  

     I am due and have an order  for a PET scan so will set that up after I have met with my surgeon here.

    I didn't know that about Mayo Clinic, that they had a waiting list for patients with  breast cancer.  The reason I considered them is because before I had chemo in 2006 my oncologist referred me to an oncologist there for a second opinion on my need for chemo and what meds to use. I just figured since I have had a consult and one mammogram done there, I would already be in their system as an established patient.  That's interesting to know that they have a waiting list and some patients get more priority than others, depending on whether they can use them for research studies.  I'm all for studies, but seems like patient's care and well-being should come as first priority.  Wonder if the hospital get grant money  for their research and that's why they give priority to individuals with recently diagnosed breast cancer and with health status, etc. favorable for research?

    Thanks so much for your help and your encouragement.  I'll let you know how things turn out.  The worst part of the getting proper diagnosis, treatment, etc. is all the waiting for appointments and getting reports back.  As far as I'm concerned it's been too long as it is since  I first noticed the bleeding (which probably had been occurring for a couple of weeks at least before I noticed it).  I've probably been having problems with my breast now for two months or so.  Too long.

  • jdootoo
    jdootoo Member Posts: 253
    edited May 2010

    Sandy: Have you asked anyone about Paget's disease? What you are describing sounds a lot like what I had. For me, the Pagets was insignificant since I had a BMX. However, I also experienced a bloody discharge from my nipple, which is why I went in for a mammogram. It is possilble to have Paget's with no underlying disease and, if this is the case, it tis a minor ailment as long as you catch it right away. Best of luck!

    One love, Jackie

  • Jellybean38
    Jellybean38 Member Posts: 6
    edited December 2017

    hi everyone dont know were to start im worried sick myself im 38 had ongoing problems with both breasts for 4 and half yrs one thing after another from papaloma to duct estasia discharge etc..i have 4 surgeries done so far all milk ducts in both breasts have been removed most recent op was march this yr.though this time round the pain is unbearable never had anything like it this is totally new breast looks a bit odd drooping to the side a bit itchy no rash but hurts when water hits it throbbing pains and like an intense sore heat goes through it under my arm which is a bit puffy right through to my shoulder blades and up my neck i cant sleep it disturbs me almost no appetite cant stand a bra on to uncomfortable i feel a hardness right under my collarbone been to clinic had ultrasound told me fibrocystic change with too many cysts to count but didnt even test them to make sure just sent me home am i worrying sick over nothing here ?????

  • MTwoman
    MTwoman Member Posts: 2,704
    edited January 2018

    Hey Jellybean, this is a forum for people diagnosed with IBC AND this thread has't been active for over 7 years. You'll be more likely to get better feedback if you post your question (unless you already have) under the "Not diagnosed but worried" forum. Good luck!

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