Some questions...

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lamomimax1
lamomimax1 Member Posts: 21
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi- it is so nice to see a web site like this.  I just have some questions maybe some of you can offer some insight on.  I haven't been diagnosed but I have a strong family history - maternal aunt died from BC pre-meno.  Mother diagnosed pre-meno and again 16 years later.  Mother tested positive for HER2 last year.  Haven't been tested yet but both sisters are negative.  Dec. 08 went for routine mammo (every year since 30).  Suspicious area - left breast.  No lump.  Did I mention I have extremely dense breasts?  Because of my history requested an MRI - again showed susp. something - same breast.  Then my dr. sent me to get an US.  This came back clear.  Whew...but since then I have developed breast pain in that breast (same area that was a concern).  I went in for a routine in March and told my dr. I was told to wait through a cycle and see if it was just hormonal.  It wasn't - my breast felt a little less swollen but the pain was still there in a slightly lesser form.  Since then I have developed a weird, itchy rash in both arm pits, and my left breast expresses some puss-like liquid when squeezed.   I have called my dr. but he is out of town and the nurse prac. wants to wait until he gets back and she can talk to him (Tues. 9th) to send me for more tests.  Do I wait or do I request another mammo just to feel like I am doing something?  If not - can anyone recommend another test? a biopsy?  I think it would either tell me something or put my mind at ease.  Any help or advice you can give would be great - I am worried and hoping my gut is wrong.  Thanks.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2009

    I would suggest that your doctor take a sample of the puss-like liquid and send it out to be analyzed.  You could also ask for a biopsy of the rash to find out what it is and request to get a PET Scan. Once you know what you are dealing with the sooner you can start treatment.

    Keep us posted.

    Hugs

    Laura

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Laura,

    Thanks for your response.  I called the nurse back today - wasn't able to talk to her but she is supposed to call back tomorrow.  I will request the tests.  I am hoping it is nothing but a heat rash (never had one before) and hormones but with my family history I want and need to rule out everything asap.  Not sure yet what a pet scan is - better than an MRI?  but I am going to research it now.  I really appreciate you taking the time to give me some advice on this.  I will keep you posted and thanks for caring. 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2009

    Lamomimax:

    Yes a PET Scan is better than an MRI .  These scan pick up alot more than any other type.

    I hope the nurse calls you back soon.

    Hugs

    Laura

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Thanks for the info.  Actually, I called her back before she had a chance to call me.  She sent a lab request for blood and another mammo request.  I have to call for an appt. - first thing tomorrow morning!  I voiced my concerns with her and she agreed that we needed to consider them but wanted to rule out hormones and heat rash or an allergic reaction first. She said because the rash was under both arms she was a little less concerned.   I pointed out that in many cases cancer does not follow a 'normal' path.  Needless to say, I am going to hopefully find out it is hormones and a clogged duct or I am going to request a PET and a biopsy once I get the results back early next week.  I am also making an appt. with a derm for next week.  Did your breast continue to swell - was it very quick?  I have stopped swelling but I still feel really full and the pain is a constant. Thanks for your help on this...you are so kind to share your thoughts and advice with me. 

    Laura

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2009

    Laura:

    I never had any of  the signs that they have  posted for IBC mine looked like dermatitis with a small mass.  My pcp sent me for a mammogram and gave me a name of a surgeon.  My results of the mammogram came back negative.  The surgeon did not think it was cancer because it had only been there for 2 months.  He said the only way to find out what this was is to do a biopsy which he did that day in the office.  He took part of the small mass and dermatitis and also skin that did not have anything on it.    If the mammogram comes back negative again I would ask for the PET Scan this will pick up any thickening to the skin and will also light up any involved lymph nodes.

    Praying for an answer for you.

    Hugs

    Laura

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    I agree with Laura, a PET scan would be the best thing.  I had no palpable mass, but I had a pink area around my nipple.  My mamo did show a 2.5cm mass, that could not be felt, and I had a biopsy of the mass and the pink skin the same day.  The next day I had a breast and chest wall MRI, and PET CT, which both confirmed the mass and thickening of breast tissue (inflammation). The PET also revealed 3 suspicious nodes, and showed no other masses from head to thighs.  IBC presents so differently for each person.  I also have discharge from my breast, it is a brownish color and is thick, it comes out on its own, I have never tried to express it.  The discharge should be looked at under a micorscope to see if there are suspicious cells in it.  Please keep us posted!  Much Love, Jessica

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Thank you both so much for help.  I can't tell you enough how helpful and comforting you both are.  I have an appt. for a bilateral mammo on Wednesday afternoon.  What a way to end the school year!  I am also scheduled for a blood draw to check hormone levels, etc.  My last mammo (7 months ago...was it that long?) showed a shadow (or something - can't remember what they called it) ...so I am curious what it will show.  Regardless, I will request a PET scan this time.  Do you know if I have to pre-approve this through my insurance?  When I had my MRI in December my insurance company initially rejected it but they eventually paid for it.  I am hopeful it is nothing but this has prompted me to get genetic testing asap.  Based on my family history, I know this will be covered.  Again, thanks for your help - I will keep you posted. 

    Laura

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Hello Laura, my ins. co. needed to pre-approve the PET, it costs around 5k, so it's a pretty serious test.  I did the genetic testing, my ins. covered 80% of it, turns out there doesn't appear to be a genetic link for me, but I am 34, so they still think there is a genetic component that they do not yet know how to test for.  BRCA 1 & 2 are currently the only genes they can test for, but there are more they can't test for yet.  If your mamo shows the suspicious area again, ask them to biopsy it, that will tell you what you need to know.  I'm so sorry you are going through this!  Feel free to private message me if you want.  Much Love, Jessica

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Went in for my mammo today.  Painful but worth it.  ;-)  The rash under my arms is starting to clear up but I still have rough skin and it still is uncomfortable. Turns out my previous films were not there (requested today) but the tech saw enough on my initial films to take a couple more films.  She showed me the concern - mass in the lower quadrant but can't be felt - the same area that hurts (can't run anymore - it is too painful).  She suggested it was a fibroadenoma or cyst - will wait to see what this report is.  If they still think it is a cyst/fibro - should I request a biopsy or go straight to a PET?  I am thinking biopsy first? or is it better to go with a PET?  Thanks for your help, care, and support.  You are both wonderful to help me through my questions and fears like this.  I hope you two are doing and feeling well.

    Laura

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    I agree with Gg08 (as usual!) The PET CT will show not only your breast, but your armpits and the rest of your body. Any increased metabolic activity will also be seen, which will tell them if the mass in your breast is benign. (benign masses do not have increased metabolic activity).  If the PET CT is "normal" then there won't be a need for an invasive biopsy.  There is also a chance your Dr. will want to do a biopsy first, and go from there.  Hard to say. Keep us posted!! Much Love!  Jessica

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Hi! I hope you are both doing well.  Well, I got my mammo report back - called the nurse and she said they came back completely clear.  No signs of mass, cysts, etc.  I asked how that could be when the tech showed me a  mass in the lower quadrant of my left br. and then took additional compression films?  There was no mention of the additional films or the mass in the report at all. She was curious also, so I called the hospital and got the radiologist on the phone.  He basically back-peddled and told me to come in this week  for a biopsy.  He would take me under his personal care to find out what was going on.  No thanks.  I then called my dr. and spoke with his nurse, she was very helpful so I asked for all of  my reports to be faxed to me.  She also called on my blood test, all results were normal.  After I got my reports I noticed that back in Dec. 2008 the MRI rad recommended a core needle biopsy if the density was found on ultrasound and a sterotactic core biopsy was recommened based on the BIRAD 4a finding, my strong family history,  and the fact that they didn't see anything on the US.   However, no one ever told me this...not my dr. office or the ultrasound tech/radiologist who had my file.  I would have had this done in Dec...fast forward 6 months later and there is pain and some swelling.  The rash is mostly gone but my armpits are still itchy and I still have a little bit of discharge on the left breast.  I am going in tomorrow for another ultrasound and then I am scheduling an appt. with a breast surgeon asap.  I am very hopeful this is B9 but I am not taking any chances...I will have the biopsy this time.  I have also learned that I am requesting my reports after each test.  I am also moving forward on the genetic testing.  It will be covered as my mom tested pos for the BRAC2 gene after she was diagnosed last time -  so I am not worried about that.  I think I negelected to mention that in the very beginning (I said HER + instead). Not even sure what that is!  Anyway, I will keep you all posted on this.  I am not happy about the lack of communication but hopeful that it is nothing.  Thanks for your support.

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Just wanted to update because now I am a little confused...went for my US today.  The tech was awesome and really talked me through everything.  The radiologist actually reading the films also came in and looked around too.  So, they finally found the mass (very small - less than a centimeter) and I am going back for a biopsy within the next week or so.  She thinks they should be able to get it all out because it is so small.  Does that sound right?  Now I am confused.  I thought if it was a cyst or fibro. they usually couldn't see it on an US?  Am I way off base here?  Regardless, now I know there is something - based on all 3 tests and the something is in the same spot as the pain.  I will wait for the biopsy report and go from there I guess.  Any advice? Thanks for your help.

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  • NYmom60
    NYmom60 Member Posts: 44
    edited June 2009

    Over the years, my sister has had a few lumps that were confirmed as cysts using ultrasound. She had a few aspirated via fine needle ( maybe this is what your dr is suggesting) which were b9 and then she decided to have one or two removed because she just felt better about having the cysts gone. A cyst can usually be distinguished from a mass by ultrasound because sound waves will pass through a cyst but not a mass. Based on all your symptoms, I think you should at least have an MRI done if insurance won't cover PET/CT scan at this point. 

     As Bonnie said, I would also check on the info about Paget's Disease.

    Wishing you good luck. 

    Monika

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Thank you so much for your advice!  I have my stereotactic biopsy on Monday afternoon.  They are using a vacuum biopsy.  I did some research and it doesn't sound much different than a punch biopsy with a hollow needle.  I think?  Is this considered surgery? or just a necessary part in identifying whatever this is?  I plan to request my report as soon as it is available - how long does this normally take?  I will keep you all posted when I get everything back.  My rash is now gone completely and the warmth is gone for now - so I am praying that it doesn't come back.  I just want to thank everyone who has been so wonderful to me - your knowledge and prayers have really helped me get through this.  My thoughts and prayers are with all of you wonderful ladies.  Hugs to you all!  Thank you for helping me keep my sanity...

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited June 2009

    Bonnie - Thank you so much.   Can I request that my path. report be done STAT with my regular Dr. or can the  doctor who is doing the biopsy request it for me?  I think the Dr. doing the  biopsy will work with me more ---  so I am hoping she can order it and it doesn't have to go through the odering doctor.  Either way, I am hoping for B9 results.  Thank you for your prayers and all of your help answering my questions.  I will keep you posted.  Thanks for caring.  Hugs and prayers to you.  Laura

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  • lamomimax1
    lamomimax1 Member Posts: 21
    edited July 2009

    Hi everyone.  I just wanted to let you know I got the results this morning and they were B9!  I cannot say tell you how relieved I am but I am still following through on the genetic testing this summer.  I just wanted to say THANK YOU for all of the support and advice you wonderful women gave me.  I could not have made it through the strange and scary symptoms that all seemed to happen at the same time without all of you.  You are truly wonderful women and I will continue to pray for each of you and thank God everyday for this wonderful forum.  Much love and many hugs.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited July 2009

    Congrts on b9 reports

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  • cheers247
    cheers247 Member Posts: 270
    edited July 2009

    I am so happy your results are B9!!!  much love!!  jessica

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