Should I be worried?

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karamarie
karamarie Member Posts: 14
edited June 2014 in IBC (Inflammatory Breast Cancer)

I have been having pain in my left breast for months now that goes to my armpit and up to my collarbone area. It is very noticeably swollen and I have had some itching and burning (almost like the 'let down'  feeling when you are nursing). It appears that my viens are getting quite prominent on the left side of my chest. The other day I noticed what looked like a misquito bite on the underside of my breast. I have been taking pictures daily for the past couple of days to note any change in size and / or colour. I had a mamm and ultrasound done a couple of weeks ago and the doctors don't seem too concerned. There apears to be some thickening of the tissue and breast density as well as a 4cm lump on top of left breast which they say is definately benign. I am 32 years old with 3 young children and have family history of breast cancer (maternal grandmother passed away early 50's). I am now being referred to a surgeon but can't be seen until Aug. 30th. The Dr was sympathetic in saying my symptoms are real but I feel that this is a long wait. After all that I have read, should I be concerned? Thanks in advance!

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  • SeanE
    SeanE Member Posts: 107
    edited June 2010

    Yes.  The skin-thickening in particular is a classic sign of IBC.  IBC often starts out as a "bug bite" sort of rash.  The swelling and warmth are also classic signs.  Especially if the skin on your breast has a "peau d'orange", or orange skin, look to it, you have every sign they look for in IBC.

    IBC is a serious and VERY aggressive form of breast cancer.  Therefore it is imperative that diagnosis and treatment start ASAP. 

    My wife had all the symptoms you have, went to the doctor, got an antibiotic for mastitis, didn't work after a week, then got mammogram and eventual diagnosis at MDAnderson. 

    You cannot afford to wait until August 30.  It still could be nothing, but you should NOT wait around to find out.  Go to the American Cancer Society website, find its list of Comprehensive Cancer Centers, find the one closest to you, and contact them.  If you describe all the symptoms you have to them, I suspect they will get you in pretty quickly.  The same happened with us when we contacted MDA.

    I hope for your sake that this something else, but with your history and symptoms, this is not something you want to wait around for.  Feel free to pm me if you have any other questions regarding IBC.  Another good resource specifically for IBC is ibcsupport.org.

    Sincerely,

    Sean E.

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  • lorieg
    lorieg Member Posts: 802
    edited June 2010

    I will echo what Sean said and encourage you to be seen ASAP.  I was also 32 with absolutely no risk factors for breast cancer.  I had similar symptoms and a scan read by a breast radiologist as "benign, f/u in 12 months."  I also had a large "mass" and was told it was a benign galactocele.  I went misdiagnosed for 6 weeks...time which may have pushed me into stage IV.  Hopefully in your case things really are benign but go to CCC, as Sean said, and get a biopsy.  Good luck.

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

    Same here.  Get a biopsy.  August is too long to wait.

    Terri

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited June 2010

    karamarie, every one gave you great advice, I just wanted to say, that the dr cant say its not cancer by looking at it, my daughter also had a large lump she was only 31 so dr didnt seem concerned and didnt want to do test, she finally saw another surgeion and demanded they biopsy it, he told her he about fell out of his chair when it came back positve for BC- You are your own best advocate, dont let anyone make that descion for you, Call and get another dr, but just remmeber, because after reading all these posts you are undoutfully scared but there are great tx out there now and IF it comes back postive you will get thru this ((((((((hugs)))))))))))

    Debbie

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  • karamarie
    karamarie Member Posts: 14
    edited June 2010

    Thank you all for posting advice about my concern. I'm not going to lie...I am freaking out a little! I have been doing my own research for a couple of weeks and everything kept coming back to IBC. I am calling my Dr tomorrow to let them know of some more recent changes and demand that I be seen by the surgeon sooner. I am seeing daily changes and know that it is not just in my head. I live in a small town in Ontario, Canada and my husband made some calls last night to get some cancer clinic numbers in the event that I cannot be seen sooner.

    I appreciate your responses and I will be sure to update anything that may come about.

    Thanks so much :)

    Kara

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  • karamarie
    karamarie Member Posts: 14
    edited June 2010
    Just a note that I did get my appt moved up to July 9th....still abit of a wait but hopefully it goes by fast. As of today, my breast no longer fits in to my braFrown
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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited June 2010

    Thats good, I know it still seems to lone!! But try to stay busy, with friends, crafts, meditate anything to get your mind off of it- keep us posted

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

    Karamarie,

    I know how you feel.  I had to wait 3 weeks before I got in to see the doctor.  Once in; I was referred quickly for the other tests I needed to verify.  Keep busy and Good Luck with your appointment.

    Terri

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  • peacelovedogs
    peacelovedogs Member Posts: 57
    edited June 2010

    Just to put your mind at ease...I found my lump in November.  My Dr,]. told me it was a cyst and not to worry.  I did not question it and went on with life.  A few months later I started noticing the changes in my breast.  The redness, the heat, the dimpling and inverted nipple, etc.  It took about another week to get a mammogram, then everything moved fast.  My diagnosis was on 04/02/10.  A full 6 months after finding the lump - and thankfully I am at stage 3B (minimum level for IBC).

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  • Shellusea
    Shellusea Member Posts: 55
    edited June 2010

    If I were you I would go asap in a medical clinic for minor emergency, say to the doc you will see that you are thinking of IBC.  I think you really need to push.  I would not wait another day with symtoms like IBC's. 

    Did you ask a copy of the report of the radiologist? You have the right to know what he write on it.  

    Keep us update,

    Hugs,

    Sue in Qc

      

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  • karamarie
    karamarie Member Posts: 14
    edited June 2010

    I just picked up my report from mamo and had a few questions, if anyone could answer. The report says moderate amount of radiodense fibroglandular tissue present. There is a homogenoeusly radiolucent mass measuring 4cm in diameter, could be lipoma...benign. Tiny lymph node seen in axilla, doubt that it is palpable. Apparently this is all okay??

    In the past week new symptoms have come up. I have developed some itching (severe at times) almost like I can't scratch it because it's under the skin. Throughout the day, I start to get a red, pimply looking rash which is usally gone in the morning and comes again as the day goes on. Any thoughts on all of this?

    Thanks Everyone : )

    I go to see a surgeon next week. Thanks

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited July 2010

    Hi Karamarie- Well, I will try to explain this the best i can, radiodense, is actually a type of dye and exray to see more dense breast, dense breast are harder to detect lumps etc,,Homogenous means a group, or close together, lipoma is a benign cysts-  that being said, untill you have a biosy you wont know for sure weather it is B9 or not-

    The itching and pimple like could be anything, rash, pimple, etc,, but it can also mean somthing more serious too. like ibc-

    I know you are scared and the waiting is hard, try to stay busy and TRY not to think about it if you can (easier said than done, i know)

    I hope i have helped some, please keep us informed and i will be keeping you in my thoughts and prayers

    Hugs, Debbie

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  • karamarie
    karamarie Member Posts: 14
    edited July 2010

    Well, I went to see the surgeon this morning and he says it is not IBC! I expressed that I am not comfortable with just walking away without an answer. He has put me on an anti-inflammatory for the (obvious) swelling for 4 weeks and then I am to go back and see him on Aug 16. He said that there is nothing for him to biopsy.  He is also arranging a repeat mammo, a chest x-ray as well as a bone scan. He thinks it has something to do with my chest wall and not my breast.

    My breast continues to be much larger than the other with quite a bit of pain/tenderness, itching and still the burn (let down). If there is something going on would it be picked up on any of these tests that are to be done (presumably before I go see him again) or is it a waste of time?

    Wondering if I held my ground firm enough???

    Thanks for listening :)

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  • SeanE
    SeanE Member Posts: 107
    edited July 2010

    Karamarie, is your doctor a surgeon or an oncologist?

    One thing I have learned is that surgeons need to stick to surgery - they rarely make good calls when it comes to the actual cancer.  You need to make an appointment to see an oncologist, if possible.  Since a palpable tumor is rarely found in true IBC, other indications are needed, such as skin thickening, which can more easily be seen using ultrasound and/or MRI.  I'd be willing to bet you could  "bootstrap" the results of those scans do get the biopsy that SHOULD be done here.

    Best wishes,

    Sean E.

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  • karamarie
    karamarie Member Posts: 14
    edited August 2010

    Just a little update......Going tomorrow for a chest x ray and bone scan. Not really sure why but hoping it will help figure out what's been going on. Breast is still swollen (seems bigger the last few days then it has been) and I am having quite a bit of pain, usually constant with a stabbing  behind the nipple. Will not see my surgeon for any results until the 30th as we will be away on holidays (much needed)

    Thanks to everyone who has listened and offered advice.......you guys know more than doctors as you have been through this all first hand!

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited August 2010

    Karamarie,

    Have you seen a breast specialist? Have you had an MRI? 

    I don't understand the need for a chest x-ray & bone scan at this point.  It took an MRI to locate the IBC for the specialist to know where to do the biopsy.  My IBC was only 3 mm but it took 2 months to diagnos. IBC can typically lie along the chest wall as mine did. 

    I would definately press the issue.  I am so thankful the specialist was persistent. I thank God for her!

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  • leisaparis
    leisaparis Member Posts: 587
    edited August 2010

    I've never had an MRI the whole time. I did however have a chest x-ray and a bone scan. Must all depend on the area you live in. And I did have both of these before surgery. My dr. is a breast cancer specialist.

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  • karamarie
    karamarie Member Posts: 14
    edited September 2010

    Hi there,

    I saw my surgeon on Monday and my x-ray and scan can back clear so he now wants to do a ct scan to see if that shows anything. He also wants to do a repeat mamm in Dec ( 6 months from the last one, which was June) We both noticed a new area of concern...small pimple like spot with a bit of red rash. I have been having awful pain in my breast today and hubby and I both noted that my breast is the biggest it's ever been (more than double it's normal size) and I have been feeling 'unwell' for a bit now.

    He is not a breast surgeon...just a general surgeon. Not really sure of what to think or where to go from here. I'm kind of at the point where I feel like I'm being a bother (the doctor hasn't made me feel this way) but I know that something just isn't 'right'. Any thoughts on what i should do at this point or what could be happening??

    Thanks so much for all the replies....it really helps!

    Kara

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited September 2010

    Kara,

    I am not an expert, but your breast being doubled in size doesn't sound good to me.  Isn't where else to get a second opinion? Hoping you get some answers soon.

    NJ

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  • karamarie
    karamarie Member Posts: 14
    edited September 2010

    Just a little update....looking for opinions.

    I just came from my doctor's office, only to be seen by a coleague as my doctor was not in today (my hubby made the appt and demanded I be seen today because of new symptoms and pain). I also have another appt with the surgeon on Wednesday. The doctor today suggested that it may be nerve damage???? Not quite sure what he is thinking, but I am not a doctor. I am still waiting for my appt for my ct scan...will this show the same that an mri would show? I have been having extreme pain and swelling (since June) and for the past few days have noticed a pinkish spot the size of a toonie about 10 o'clock, left breast. It feels as though my breast is on fire and hurts to touch the skin. Anybody have anything similar. I am starting to think the Doctor's believe I am crazy and they have just sent me on my way with pain meds. I am completely lost as to what to do now.

    I appreciate all the support...you are all such strong, amazing women, armed with the power of knowledge!

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited September 2010

    Karamaria,

    What's a toonie? 

    You have a 4 cm mass, but yet they don't have anything to biopsy?  I don't understand that.

    A CT scan can show tumors or enlarged lymphe nodes.  An MRI is going to show a lot more detail than a CT scan. I didn't have a CT scan until after all my treatment was complete.  I had the MRI for diagnosis.  Here is a link to explain the difference.

    http://www.listen-up.org/med/ct_mri.htm

    I'm sure you are very frustrated & scared, I would be as well.  I am praying that you get some answers soon. NJ

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  • karamarie
    karamarie Member Posts: 14
    edited September 2010

    lol. I am from Canada and a toonie is our 2 dollar coin...sorry : )

    As for the mass, my report says homogeneously radiolucent mass left breast 12 o'clock radian 4cm, could be lipoma, definately benign. I guess they aren't worried about this?? Tiny lymph node seen in axilla, not of concern. I should add that I had this mamm June 1st and the swelling and other symptoms (besides pain) started mid June. Sorry if I am repeating things...just trying to make sense of it all.

    Thanks for your reply NJ

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