just need some advice

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smaysings1
smaysings1 Member Posts: 57
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi,

My name is Sarah. I am 27 years old with a strong family history of breast cancer. In July of 09 I after getting out of the shower I noticed some scaly itching skin on my left nipple. I of course picked at it.. I know eww.. once I did this I was further grossed out to see a clear, amber colored liquid coming from it. I was actually thinking of how embarasses I was going to be going to the doctors for an infection. I swear I wash my bra's!! Well it was at night so I couldn't call the doctor yet so I decided to do a self exam too and call in the morning. There was a thicking of tissue on the top of my breast. sort of twoards the outside. I went to my PCP who sent me in for a Mammo and and US. Both came back neg but the area I found was too dense to see thru on the Mammo and while the tech saw nothing on the US (she was extremely rude and said I was too young and theres nothing there), I saw a small dark area that didn't look like everything else. Both test showed NOTHING at all and my PCP tells me it's a fibritic cyst. My question is how can you call it anything when you see nothing?

I got a new PCP who sent me in for an MRI because he felt that my breasts were too dense for mammos and US. BTW both of these doctors have felt the thickness and both have seen the discharge. I wait way too long for my MRI results and am told that it was clear. Ummmm then what IS it??? Still no answer on this.

 2 months ago my left breast started being tender to the touch. I have shooting stabbing pains, and extreem itching. Like right now I am sitting at my desk at work and can barley stand wearing a bra (I just might take it off). My left is now bigger than my right(maybe a size bigger). I have this burning pain too thats pretty much constant. The itching and burning seem to include my colar bone and under my left arm pit. This month I have noticed a slight dicoloration extening from my left nipple... Kinda like an under the skin bruise.. not really dark just slightly noticable.

 My question is what do I do next? Is it possible the three test before would have missed IBC?

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2009

    If you suspect IBC, INSIST that they do a punch biopsy and maybe even an excisional biospsy to get some of the breast tissue instead of just skin.  (They took both for me.)  Better safe than sorry.

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    See a breast specilist and get a biopsy ASAP.  My scans were read as mastitis (I was nursing) and a cyst.  I kept asking if I should see a breast surgeon and was told "no" multiple times.  I finally scheduled an appointment anyway and was diagnosed by a core biopsy that day.  My scans originally read "benign, no evidence of malignancy.  Follow-up in 12 months"  Thank God I listened to my own instinct.  I am 33 years old with no risk factors for breast cancer. 

    I pray you just have a skin issue, but don't wait to see a breast specialist. 

    Hugs, Lori

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

    Thank you ladies!!! I know in my heart I should be fighting harder and faster. I suppose I just needed someone to give me a little shove. I have been fighting over this for four months and now have my sister and mother crying at me to please go get yet another opinion. I have a special needs daughter ( schizencephaly (clefts in the brain) cerebral palsy, and hydrocephalus with a VP shunt) sometimes I feel like I've used up all of my fight on her. I wish I could get to MD Anderson! I hear wonderful things about them... But I live in MI. I can't even find a breast specialist in my area! I am going back to my PCP on Monday. I am taking a print out of all the symptoms of IBC with me in case he doesn't know much about it. He is also my mothers doctor and knows that she will freak out until I get the tests she thinks I need... so hopefully that'll be a push... Or I'll find another doc I guess!!! Thank you and I will keep you posted and you will continue to be in my prayers, as you all have been since I was 13 and watched my grandmother with BC.

    Latest symptom: Tingly itching sensation from my arm pit all the way to my hand... Kinda like when your circulation is being cut off partially. I'm gonna keep searching for a breast specialist.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited November 2009

    smaysings1:

    Please see a breast surgeon and get a biopsy.  Where in Michigan do you live?  You may want to check out U of M.  I would call the cancer line and talk to one of the nurses there they will be able to point you in the right direction.  Let them know about your fear of IBC there is an onc there who is doing research on IBC and has a clinic. 

    Hugs

    Laura 

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

    Caseysmom,

    Thank you SO much for your advice! I hear about the cancer answer line on the radio all the time but I thought it was just for people with a diagnosis. I asked for a breast specialist in my area and she asked for my symptoms. I started telling her about them and my experiences with other doctors. She told me that THEY would not treat me like that and I had a right to know what is wrong whether it's cancer or not I should still know what it is. She sent me straight to their breast specialists and the ball is rolling for an appointment (they cant actually set one up until they have my mammo and US report). So while I went from really thinking one of you would tell me that while I'm scared it's all in my head (i mean enough doctors have looked at me) to being scared again... but at least there is action again. Thank you again.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2009

    Please keep us posted!

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

    Yes, I have all my films... my mammo, my US, and my MRI (on disk) I do this because I do it for all my daughters stuff. I sent my reports in to U of M on Friday and didn't hear back for an appointment yet. I am going to call again on Monday to see if they received them and whats going on. The pain seems to be worse this weekend, I haven't been able to sleep, not because of the stress, I'm still not as stressed as I was when I fist started all this stuff 4 months ago, but I wake up from the pain. every which way I lay seems to eventually hurt. There is a new small light bruise right on top on the thickening. Also my areola is pulling in on the side with the pain so now it's more oval shaped than round. Thank you all for your support, this group is so great and supportive. Thank God for all of you! I will let everyone know once I have more information!

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  • cheers247
    cheers247 Member Posts: 270
    edited November 2009

    smaysings1, keep us posted, I'm so glad you are getting an appointment at the right place.  There is no such thing as "too young for breast cancer"!!!  I hate hearing that, doctor's still say it to me, and it drives me nuts!  I hope you have b9 results!! Much Love, Jessica

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    I was going to recommend U of M until I saw that Laura mentioned it.  Good luck to you.  I really hope you get good news,

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

    Update:

    I called U of M today... they hadn't received the reports yet. I called the hospital where I had the tests run and the lady said she did send them and get a confirmation but she was happy to send them again. She did. And 15 later I called U of M again to be sure they received them. They did. This was all around 11:30 today. It's now 3:30...should I call again and see how there coming on scheduling me or should I wait until tomorrow and call if I haven't heard back? I'm not sure how quick this is supposed to work but I do understand that the sooner they call the sooner I will get an appointment and the sooner the better. What do you think?

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

    U of M called today. I have an appointment on Dec. 14th. Actually 2. The first one is at 7:45 for a film review. At that time they will look over my films and see if I need new or different ones. If I do they'll take them right then. After at 9:00 I will meet with the BS hopefully at that time I will be able to get the skin punch I want done. 20 days seems like a long time to wait I mean just this week has been long. But it sound like they will be thorough and at least I will finally see a breast surgeon like I have wanted all along.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2009

    That time will pass.  Keep busy getting ready for Christmas.  Glad you finally have something on the schedule.  Good luck and keep us posted.

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

    Faith, so you don't think this is too long of a wait?

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited November 2009

    smaysings1:

    Twenty days seems like a long time to wait however it would not hurt to see if you can get something sooner.  Let them know you are really concern this could be IBC  and you know how agressive it is.  If they can not get you in sooner. just keep the appointment and I would suggest keeping a journal of any new symptoms that pop up between now and your appointment.

    As Faith said keep busy I know that is very hard but Dec. 20 will be hear before you know it.

    Hugs

    Laura

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  • smaysings1
    smaysings1 Member Posts: 57
    edited November 2009

     Thank you Laura! The journal is a great idea! I will start tonight. I guess the problem is that I am always thinking about it and my family is starting to get sick of it.I found a red non painful lump on my neck that has a black spot in the middle of it and I know breast cancer often causes METs on the skin. I asked them to look at it because I can't see it very well and it turned into a " oh you have a scab here it's cancer. and on look at that scar I bet it's cancer" sarcasm fest. So it's a little upsetting. Oh well maybe i'll journal about my fears also... that way they won't have to hear it anymore. Thank you so much for caring and being here!

    Sarah

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