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Not diagnosed, looking for input

ashleysscared
ashleysscared Member Posts: 23





hi my name is ashley, 28 with symptoms i cant ignore, even though everyone else seems to.



it started as a divot, a little dimple in my right breast with an enlarged lymph node in my arm pit,



dr ordered mammogram and ultra sound on 1/16



radiologist refused me a mammogram because of my age, and u/s showed no lump or mass only solid lymph node, gave me the ok, asked if he looked for inflamation in the skin or if he has ever seen IBC on u/s before, told me "your too young for that" radio was a jerk on 1/18



then between then and now the fun stuff happened.. my breast started looking pinkish, and raised in the area that is starting to discolor, along with the feeling like, well, when your breastfeeding and you get super engorged that let down is painful, if that makes any sense... It feels heavy and full and it hurts!!



2 days ago was a new symptom, nipple discharge. gross, but true.



saw doc thursday and she said maybe she will push for an mri or for a breast surgeon... i brought up IBC and was dismissed because I dont have the peau de orange.



Doc called yesterday with orders for an MRI at legacy breast center, and I am supposed to call the day I start my period because they want it on the 7-10th day of my cycle.





I just have this feeling that something is wrong.

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Comments

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Thanks Bonnie! I do have a pinkish swelling in the right affected breast that looks more like hives than pits, also my right breast (affected breast) was the smaller of the two and is now larger and starting to get firmer as the days go by.

    I have noticed that as they days go by the redness is worse in the morning than evening, and the symptoms keep piling up day after day.



    I should start my period within the next few days so hopefully I can get my MRI soonish. (It is with a different company) I do believe they are doing a breast MRI if not, I will request when I call. I am also calling a breast surgeon on Monday to schedule as well.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited February 2013

    Hi Ashley- I've had the heavy, engorged feeling then spontaneous discharge, my left 6 years ago and my right now. On the left, it was 2 benign papillomas blocking a milk duct. They tested the fluid and it was abnormal, so I had a ductall excision to pull everything out. My right just started a few months ago and I'm headed back in to the doc, sick or stained sheets, guessing its the same issue. Ugh! I know you're scared but it could be a harmless papilloma. Hugs to you, sweetie!!

  • april485
    april485 Member Posts: 1,983
    edited February 2013

    Praying that yours is a "harmless papilloma" this time too Carpe! When will you know? You are in my thoughts and prayers and I thank you for reaching out to me when I was so afraid of everything. I am still afraid now that I have been diagnosed, but so much more educated!

    Edit: Meant to wish you luck Ashley! Praying for b-9 results!

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    I don't have a ton of nipple discharge, just a few drops randomly here and there, but man I forgot how that engorged let Down feeling hurts!! Was your breast hot and rashy too?? How was it diagnosed? I hope you go back to the doc and it's the same thing!



    Thank you April! I am so thankful for the crazy amount of support here!

  • sarahsmom
    sarahsmom Member Posts: 276
    edited February 2013

    Hi April, thanks for your kind words and I will keep you posted.  You actually sound in a "better place" now that you have information and can move forward with a plan, as crazy as that sounds!!

    Hi Ashley!  My breast was hot to the touch. When this would happen at night, I would feel flushed, almost like a hot flash.  Wear a white tee shirt to bed from now on and see if when you wake up it is stained or your sheets are stained.  Just to have more info for the docs - if so, take a pic of it so they can see the color of the discharge, it makes a difference.  We all have nipple discharge everyday, but these pesky papillomas can block it, so the fluid builds up until it is either forced out manually or spontaneously.  Spontaneous discharge has a little higher risk factor attached, I'll see if I can find that reference.  Anyhow, don't play with your breast, because the docs may want to sample the fluid and you want it to come out easily.  My doc has to manipulate my sore breast for 15 minutes to get one drop to test, and that was so uncomfortable, I can't even put it into words!!

    I did not have a rash with this, but I have had weird circular spots that scared me, those were quickly cured with over the counter fungus fighters like lotrimin. 

    Anyhow, just more info to lessen your fear, make you more educated and in control! :-) Remember to keep your stress levels down - all of that adrenaline, blood pressure and heart rate spikes, not eating and sleeping is not good for your body and I see it as "feeding the beast" - if there is one!

    Hugs to all of you wonderful ladies!

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Well over the course of the day my right breast has gotten even larger and now the swelling is going up into my armpit. The rash is still pinkish and no peau de orange, but the swelling with the rash is also getting markedly worse. I think I'm going to call the breast surgeon tomorrow instead if wait till my breast MRI.

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Ok, so the rash is now itchy, itchy itchy, and so swollen that when I scratch, blood actually comes to the surface! Help! How do I deal with the itching!!!

  • itsjustme10
    itsjustme10 Member Posts: 64
    edited February 2013

    Any doctor would probably freak if they're reading this, but try clear caladryl.  If nothing else, it might help calm the itching.  When are you seeing your doctor?  It sounds like you really shouldn't wait.

    And this may be insane, but have you tried wearing a 100% cotton bra?  Maybe you have developed some weird allergy?  And maybe wash everything in something like Ivory Snow and no dryer sheets?  Yeah, I know, but it can't hurt to try.

  • AnnaC11
    AnnaC11 Member Posts: 1
    edited February 2013

    That is extremely weird that the doctor would not let you have a mammogram because of your age.  28 is the prime time to be receiving mammograms and if anything prevention is key.  

    I think these symptoms will help you in deciding wether or not to proceed in doctor visits.  If you have two or more of these symptoms it is serious.

    Some warning signs of breast cancer are—

    • New lump in the breast or underarm (armpit).
    • Thickening or swelling of part of the breast.
    • Irritation or dimpling of breast skin.
    • Redness or flaky skin in the nipple area or the breast.
    • Pulling in of the nipple or pain in the nipple area.
    • Nipple discharge other than breast milk, including blood.
    • Any change in the size or the shape of the breast.
    • Pain in any area of the breast.

    Do keep in mind that having these symptoms does not mean that you automatically have breast cancer.  Review and educate yourself in this topic and proceed from there.  Good luck to you.

    (http://www.cdc.gov/cancer/breast/basic_info/symptoms.htm)

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Yeah, in the last week I've tried ruling out a skin allergy. I took some Benadryl and 800mg ibphrophen (sp) and it helped a tiny bit. Rocking an ice pack in my shirt is giving me the best relief for the moment.

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    It wasn't the dr, the radiologist refused to do the mammogram. It is also somewhere I will not visit again!

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    I completely agree! We generally have a very skin allergy friendly home, because my 4 year old has severe eczema. But when I started to get rashy I checked EVERY thing lol!

    The ice pack seems so keep the incessant itching away, and turns the burning down to a dull glow instead of a raging fire if that makes any sense.



    I finally got my insurance mess figured out, referrals sent stat to the correct places... I feel terrible but this morning between the insurance, the itching, burning pain, and new swelling of my breast I emotionally vomited all over my doctors MA. She was so amazing!

    You ladies are so amazing. Thank you all for your support, and reassurances. The tips and tricks to get thru... You are priceless!

    THANK YOU!

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Appointment with the breast surgeon/oncologist Friday. Finally.

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    I didn't actually throw up on her, just unloaded all my emotional build up.



    I'm ready for next week, when everything is done and whatever needs to be done has started.



    I'm thankful my mr is also a cancer survivor and is so supportive!



    I'm so tired. Just exausted. Ready to get the show on the road, ya know?

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    I'm ready for Friday. Maybe at least then I will have SOME answers, probably not all, but I hope for at least a few. My partners diagnosis was much different, timeline wise, as was my dads.

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    So things have the potential to become a shit storm on Friday?

  • anonymice
    anonymice Member Posts: 52
    edited February 2013

    Ashley, you are on the right track.  Don't give up your fight for one second until your symptoms are entirely resolved, whether that be from an antibiotic or from chemo.  It is utter crap to say you're too young...that is a hallmark of IBC, it strikes younger folks than other types of BC.  The Morgan Welch Inflammatory Breast Cancer organization was named for a young lady who died of IBC at age 24.  I also had a surgical oncologist tell me that I "wasn't presenting like IBC" because I never had a "bug bite", my rash was never anything but the lightest pink.  I developed the peau d'orange in the couple of weeks it took to get a diagnosis. 

    If it IS IBC, whatever you do, do not accept current internet stats.  Treatment in IBC IS progressing and our stats are more hopeful.  And so very often, so very sadly, those who fall to the disease are folks who were told by dumb@ss doctors that their symptoms were not IBC when they were, and they are left to have the disease advance for months (or even more than a year) with no treatment.  You would not let that happen to you, we as healthcare consumers are becoming more and more informed about the possibility of IBC (because doctors RARELY are) and that gives us more time for treatment than even folks diagnosed just a few years ago. 

    I've been told by many a professional that I saved my own life by being a pain to medical professionals and finally getting to doctors that truly understand IBC, because my symptoms started to increase geometrically in the last 2 weeks before starting treatment - I have a pathology (Her2+++) which contributes to the aggression of this already most aggressive disease.  Whether my life is "saved" or not remains to be seen, but I have been NED (no evidence of disease) for 2 yrs now and though that doesn't seem like a lot of time when you were expecting to be an old lady rocking on the porch...it truly is precious, wonderful time.

    Hang in there.  You are doing great.

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Thank you! I wish it was tomorrow already! I've read so many different presentations of this cancer, I can see how diagnosis is hard.

    My rash is worse in the morning then afternoon, I am thankful my pcp has already ruled out infection, mastitis and even fungal, my breast is swollen but not hard, the rashy part is much more inflamed/swollen then the rest of the swelling. The other spot that looks like a bruise just above my areola is getting bigger and now that part of my areola is getting darker as well. I've tracked the progress in photos, and I will be showing them to the bs tomorrow as well as asking for a punch biopsy just to rule it out immediately. And then go from there.

    My partner is pretty fierce when it comes to doctors, he was misdiagnosed with testicular cancer by 5 different doctors, and it was caught by an er doc!



    He won't let that happen to me!



    Thank you so much for all your kind words and support!!

  • itsjustme10
    itsjustme10 Member Posts: 64
    edited February 2013

    Good luck today, Ashley!! :)

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Met with the doc, nice lady... She ordered a mammogram to follow the breast MRI. There is definitely something going on, but wants to do the mammogram and MRI before she does a biopsy. So MRI Monday morning, mg on Tuesday, if they look ok follow up on the 26th, if not obviously sooner.

  • Ariom
    Ariom Member Posts: 4,027
    edited February 2013

    That's good Ashley!

    You're doing the right thing following up on this and sounds like a good proactive Doctor too.

    Great that you don't have to wait too long for the tests either.

    All the very best!

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    I did get the "dismissed" feeling from her at first, she came in looked, felt my affected breast, adressed the pain and that was it. After Josh voiced his opinion/concerns she had to reassure him that she needed much more information and that this would not be the last time we would be seeing her.

    With my biological mother mother having ovarian cancer and colon/breast/bladder cancers in every generation on both sides I was freaking out(my mom was diagnosed at 45) I feel much less anxious today!

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Looks like doc wants to do genetic testing as well... Any of you guys had to have it prior to diagnosis??

  • itsjustme10
    itsjustme10 Member Posts: 64
    edited February 2013

    I didn't have it, but it's a good idea - just another piece of the puzzle.  Hopefully you come out negative for the BRCA gene mutations, but with your family history, it's smart to have it done.  :)

    Your doctors are treating you well, and I'm sure they'll come up with some sort of diagnosis soon.  Hang in there!! :)

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    I am really happy with the drs I am seeing! The radiologists have both been rude. Today I got to play 1 million questions because surely my bs did not order this.. Are you kidding me?! I finally told the lady it was actually ordered twice! Once by my pcp and again by the bs, so OBVIOUSLY it's needed. Jeeze! Then it was "well why didn't you get a mammogram" and I had to explain all over that the other radio refused and tomorrow I have another appointment with a different radio. Then it was "so you us showed nothing?" Then it was yes, it showed a 9mm intra mammary lymph node, as well as a 1cm auxiliary node. "Oh, well... Humph"



    I mean I know I'm young, but it doesn't make me dumb. I know snotty when I see it. Yeah, yeah, I know the info is important. But she was interrogating and just rude. Jeeze!



    Lol! Boobies squisher tomorrow, then appt with the geneticist.



    The mr had a good point.. I may very well have the brca mutation at that point I could justify new boobs:) that stay put and not fall into my armpits when I lay on my back!

  • melissadallas
    melissadallas Member Posts: 929
    edited February 2013

    Ashley, I was tested for PTEN(?), CHEK2 & BRCA & was negative for all. My dad's mom & sister had colon cancer & I had ovarian cancer, though a rare one that oddly does not up my breast cancer risk much.

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Genetics are fascinating to me! Maybe I am obsessed. I was adopted and just recently (within the last 3ish years) found my biological parents, so all this family history and traits is forefront in my mind.

    They caught my moms ovarian cancer early during a hysterectomy for endometriosis, and that was 7 years ago.



    I guess how they figure all that stuff out is interesting, calculating risk factors and what not. I didn't even know about the genetic testing until the bs nurse called to schedule my appt for the tests. The bs never mentioned it. But like I said before, she needed more info before she could say anything. She did help me focus on some b9 things that could be going on, serious, but treatable. She was worried about the appearance of my breast but was thankful infection had been ruled out and now we can get "serious" and figure out what is going on because there is definitely something. It's just figuring out what.

    I'm confident in her.. And my that voice in the back of my head screaming still.

    I told her that something in me is screaming something is not right, and she said she's seen that a lot, and generally there is alot of truth in that little voice.



    Thank you all so much. I am so thankful for all your reassurances and information!

  • melissadallas
    melissadallas Member Posts: 929
    edited February 2013

    Me too! I was so pissed my freshman year of college because I wanted to take genetics & they wouldn't let me:)

  • ashleysscared
    ashleysscared Member Posts: 23
    edited February 2013

    Bon, I decided I will be bringing my reports with me every time I go :) I completely understand their want to compare, and because my first ultrasound was done at another hospital group it's not always easy to get the records. I do have copies of the images from my first ultrasound and the radiologist report, and when I go today to my mammogram I will be getting a copy of my MRI/reports as well.



    And holy cow that breast MRI was the most uncomfortable thing ever! I am so sore today and brused from the thingy you lay on... Also something new, easily brusing.



    My next appt with the bs is on the 26th, two weeks.. Feels like forever, unless what ever is found is super pressing then obviously she will get me in sooner.

  • liv-
    liv- Member Posts: 272
    edited February 2013

    lol bon

    xx