Scared out of my mind HELP ASAP

Have they ruled out mastitis, since you have a 6 month old?  I am not expert, but I thought inflammatory BC mostly presented on one side, not both sides at the same time.  Do you have fever?

Dear PA Mom - My heart goes out to you. You sound absolutely terrified.  I read over your various posts and I am concerned that you are panicking so much that your body is full of adrenaline and you are hypersensitive to all kinds of minor stimuli and are more and more convinced that every one of them is cancer. i'm not saying you don't have bc. But I know when I was first diagnosed, I was SO terrified and filled with anxiety that I swore I could physicall FEEL the cancer spreading around my body. As it turns out, it was localized to the breast tumor, which was removed and I had treatment, and now almost 3 years later, I have various aches/pains and just shrug them off the way I did before.

So here is what I would tell my daughter if you were she:  Call your doctor's office and ask to speak to a nurse. Tell her your symptoms are getting worse and you are having difficulty waiting for the results of your test. Try to make a personal connection (address her by name, etc.) . Ask when you can expect the results and if you can call back if you don't hear by that time.  If you truly cannot function and care for your child until that time, ask for medication to help with the anxiety - ativan or xanax. If they call that in for you and you can get it quickly, a small dose will help you manage and function until you have more information.

Believe me, I am NOT saying ihis is nothing, or all in your head. What I AM saying is that the crippling anxiety you have (which I had, too) can magnify and make everything so much worse.  I also do wonder, as another poster did above, if it could be mastitis or some sort of infection related to your recent childbirth.

PLEASE take some deep breaths, make as calm a call as you can to the doctor's office. Speak calmly but use strong words. "I am having trouble functioning" is a sentence I have found to get results.  Stick close to this board and let us know how you are doing.

Whereabouts do you live? Both my daughters live in Philly.

Amy 

Thanks for clarifying re the birth situation. I guess it's not from childbirth then! 

The meds will help. I am glad you got them.  Even if it IS bad news, PLEASE do not start thinking about not being there for your baby. You have lots of life ahead of you. There are many treatments (some of which do suck, I will admit) and options. I know this is scary but you haven't even begun to fight yet. 

Hang in there, get the results, and see what you have to deal with. Don't look too far down the road.  If it is a cyst, the swelling may be causing the nipple to invert. Does that make sense?

Please keep us posted.  Yeah - you're way further west than me.  I bet it's pretty out there. 

Have they given you any antibiotics? They ususally try that first, but if no improve after the first round then it needs be addressed further.  You just had the MRI, this may sound silly but was it a breast MRI?  It took a breast MRI to find the 3mm tumor causing my IBC. Are you seeing a breas specialist? Hoping you get answers soon. NJ 

I'm new to this journey, but I have made contact with several women who have IBC and they say it is not an easy cancer to diagnose because it is rare.  You will have to be your own advocate on this and push for more tests and a biopsy to get a proper diagnosis.  I am going to PM the woman I have had contact with on this subject and have her talk to you as she has answers on how to proceed.

It's important to stay calm and focus on the end result...a correct diagnosis.

Sending prayers and positive energy! 

Hi PAmomOf1,

I'm Claudia and the one Kaara referred to in her post.  You have several of the signs and symptoms of IBC and you should check them out at the Inflammatory Breast Cancer Foundation website, www.eraseibc.com.  Don't let a doctor tell you young people don't get breast cancer. We've seen cases of IBC in females as young as 12 and 16. Also, breast cancer CAN be painful. There is still so much education needed about IBC, and that's what our Foundation does daily. If you do NOT have a fever, you don't have an infection and they should "rule out IBC" since it's so aggressive. If you are anywhere near Philly, Fox Chase Cancer Center has one of the newest IBC clinics in the U.S. Let me know if you have any further questions. 

Dear PA Mom,

I'm sorry I didn't catch your post until now.  I have now read your other posts and this one, and I'm wanting very much to help support you on this situation with your breasts showing rather serious symptoms, whether it's breast cancer or not.  I can only tell you what I would do if I were you, and forgive me for bossing you around, if it comes off that way.  The breast specialist you saw is not up-to-date on Inflammatory Breast Cancer, which yours sounds just like that, altho it could be something else like an infection for some reason.  But since I've had IBC, I know precisely what it is like, and you sound like me in many ways. 

The poster MRS. NJ helped me so much when I started out earlier this year, and I hope she will come back and help you.  I want to help you, too.  Now, in this thread, a little ways above me, CLAUDIA has given you the absolute best information you could possibly have, and that's to go on to Philadelphia where the Fox Chase Cancer Center is located, with a new clinic just for IBC.  Your regular doc can give you a referral and set up an appointment almost immediately.  Today is Tuesday, and it wouldn't surprise me if they had an opening this week!  The breast cancer docs in the IBC clinic will know immediately upon looking at you if you probably have IBC or not.  So, please, you've had experience getting in to see your regular doc quickly, just whichever way you're sure to see them today or tomorrow, and ask them to set up this appointment with the Philadelphia Fox Chase Cancer Center forthwith.

Now, it should not be lost in the shuffle that you said in another posting that your mother's sister died of breast cancer at your age.  This is a significant point of history and you should of course make dang sure anybody you see hears this, as you get to Philadelphia and are there, if you choose to go.  And as for going to that place, I am totally stuck like glue to my cancer center here, it is my lifeline, I wish I could live there!  My doctor is my closest ally in all this stuff I went thru.  So, if you will please take time off work for a couple days, perhaps ask your partner to keep the baby, and go on to Philly.  You may not have to stay over, but pack a little bag in case you wind up at a Holiday Inn Express or something near the clinic, if there's one nearby.

I will tell you my symptoms as my IBC and Invasive Ductal Carcinoma IDC became worse.  It started out with I felt this thickness across the front of my breast, with the nipple being the middle, and I looked down at it and noticed it was much larger than it used to be, and the color had changed to a darker shade.  I knew I had to see a doc.  As I waited with that decision, I began to feel pain in my breast, which may have had more to do with the IDC, shooting seconds of pain.  And just before I went to a doc, that's when I saw that kind of red smudge discoloration across my breast above where the nipple part is.  It was maybe two inches wide and one inch in width, it literally appeared overnight.  Just beneath it was my largest IDC growth, which I NEVER felt, but I do think that skin mark was part of my IBC.  I also did not feel pain in my lymphs under my arm, but after various mammograms and scans and ultrasounds, it was found my lymphs were not only enlarged, but I had an adenopathy in my arm pit, which is infection from a previous dental problem I had had.

Your symptoms are mine in spades.  The docs in Philadelphia will know what you have.  I went thru chemo for a few months, THEN came surgery, and finally radiation.  I am done with my treatments, i feel very good and also am convinced my cancer is gone.  But when I think just how fast that thing progressed, I wonder how come these docs you've seen aren't being a little faster on this issue.  I mean, my docs practically gave me chemo the first day I walked into their offices!  They want to jump all over it.  So, go on to Philadelphia, you'll get the very best treatment there, they'll know right away what you got, they won't fool around, and IF you have breast cancer, they'll take over and make you well.  You may put aside some of your concerns about "what if" for now, just shelve it for when you're sure or not if you have cancer, and then only take if off the shelf and look at it when you're good and ready.  I must go right now.  GG 

I would strongly suggest you take Dogeyed's advice and get to that center in Philly that specializes in IBC.  It could save your life.  You are much too young to take risks..you have a baby, a loving partner, and an entire life to live.  Apparently doctors just don't have a complete understanding of this type of bc because it is rare.  You had an MRI but no biopsy yet?  You need a biopsy to rule out IBC.  

Please don't delay...we are praying for the best for you!  

Sounds like everyone is given you good advice.  If you can get to the new IBC clinic, it sounds wonderful.  IBC does affect the lymph vessels to the skin.  My skin punch biopsy was negative but the MRI found it.  As you can see, IBC presents differently so havin g a doctor with IBC experience is key. I am thankful my breast specialist had experience was didn't brush me off.  You are your best advocate so fight or go where you need to go to figure it out.  Your life is worth more than the money.  NJ

PAMomOf1, I want to jump in here and echo what some of the others have said -- go to Fox Chase in Philly for a second opinion.  Dr. Cristofanilli and his staff there are world renown and he is such a caring doctor.  I took my mom there this year as she'd been diagnosed with IBC by her doctors in SC.  After a thorough examination, Dr. C determined that it was not IBC and he made some suggestions for her care when she returned home.  We just felt that the second opinion was so worth it, and regardless of the diagnosis, seeing a top-notch doctor that specializes in IBC was the right thing to do.