Breast tissue....

angeltam

Gg08,

Yes, and that is what I am going to tell him. Cancer was thought to ONLY affect older people, that was supposed to be the "Norm" and now they are finding out it CAN and DOES affect ALL ages, both female and male. I am tried of doctors telling me well "Normally" because everyone is different. I'm just wanting to rule it out. It just seems a biopsy wouldn't take much time out of their (doctor.surgeons) day and they'd still get paid full price for what they are doing.... I can't see why they wouldn't just do it.

So, as it stands right now I'm in pain, have a bunch of oblong balloon feeling spots all over my breast now, can't even touch my nipples they hurt so badly, warm feeling on both breast, hurting in my underarms, feeling pain when I bend my neck down towards my chest in my underarm, I have a bunch of tiny lymph-nodes (or lumps) all around my neck area, still swollen lymph-nodes underarms as well (although I'm told even if they've been swollen for months they are not as big as with cancer patients) and two tiny ones in my collarbone area, when I raise my left arm up it hurts and feels as if it's pulling on something in my breast....

I'm taking pain medicine all the time now.

Thanks again for allowing me to vent. I have to say it does help some...

You are all my Angels here on earth. Thank you for the wonderful support.

angeltam

seeing my doctor on Tuesday. I want to call him tomorrow so badly but it's Tuesday....

I have more of those oddly shaped (oblong mostly) places under my skin on both breast and right under my collarbone area. My daughter said they feel like blisters under the skin. I found out thanks to Gg08 that it is most likely swelling. I'm just worried because something new seems to come up daily. I'm scared and I'm mad that it feels as if doctors aren't doing their job. I have bruising on spots of my breast and they are looking wrinkled like.. Does anyone have this too?

I did however see there was someone on here near Knoxville and have sent a message wanting to know who they would recommend or who their doctor was. I can travel at this point just within driving distance.

Right now holding my Grandson, seeing his smile and hearing him laugh makes me want to PUSH even harder for the doctor to do something. He gives me a voice I didn't know I had, a courage I to speak up that I've never had.

Any advice on what to tell the doctor or ask when I do see him?

Thanks again and Praying for all of you.

angeltam

Thank you Gg08... I wish I had good news. This is what I posted on the "Not DX " board.

TY for thinking of me I REALLY needed to hear that. I know it may not seem like it because I'm an emotional wreck but I do think of everyone here and pray for ALL of you daily.

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I can't understand how this doctor can ignore ALL the other symptoms and that includes the redness/pinkish and bruised (purplish) skin that's all over my breast, the small areas that feel like blisters under the skin, all the lymph-nodes swollen, the pain, the color change in the nipple and everything else! Plus he adds... At least we can rule out any infection, As if that is supposed to make me feel better. It does NOT matter fact it makes me feel MUCH WORSE! I'd rather it be an infection.

My poor boyfriend is lost and says ........

"I don't know what to say at this point.  I've heard it all after this. Why is everyone so incompetent?????"

He is so stressed out, as I am.

I'm calling my insurance to see if they will allow me to get another opinion from an "Out of town Doctor" and if I'd owe anything for doing so. I'm just worried because I have "State Insurance/TennCare" and not sure they'd go for that. I just want to out rule IBC. My stress level would go down so much even still having that awful problem, at least I know I have "time" to do more test and try things as irritating as it is.

I'm also calling to speak with someone at M.D. Anderson and see if they know of anyone here that might be able to see me. I'm grasping right now.

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angeltam

I just spoke with an Oncologist office and they said that I NEED to go to Knoxville Comprehensive Breast Center and that I should call today and get an appointment, last thing she said was "She would pray she doesn't have to be seeing me".

I already called KCBC and had to leave a voice mail for them to call me back. Waiting and praying that this will be the help I've been waiting for. I just want to rule it OUT or know and start treatment....

I just wanted to update everyone. I hope everyone is having a good day and getting the answers/help needed. My thoughts and prayers go out to all of you. Thanks for all the advice, support and encouragement.

angeltam

Just wanted to update here what. My appointment w/ KCBC did NOT go well at all. It's sad because that lady had NO clue how it's detected and said "Doctors can tell as soon as a woman walks through the door they have IBC" and because I do NOT have the "orange peel" look I couldn't have it. I left telling her the "TRUTH" about IBC (I took my papers from M.D. Anderson w/ me, crying as I walked out.

I almost gave up hope and thought I'd just live with this pain and symptoms, feeling I was getting no where but I found a site and it was as if GOD was pointing me in the right direction. On the website I read Thompson Cancer Survival Center here in Knoxville was M.D. Anderson's name, they work close with them. Therefore I wrote them a letter (via e-mail) sent it & GOT a reply. Below....

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Good morning Angel,

  I have reviewed your e-mail.  You have been through a lot.  I have also forwarded this to Missy our multidisciplinary care coordinator.  We are thinking and discussing it and will respond to you today or Monday at the latest.  Please do not hesitate to call me if need be.

I will be in touch,

Kim

Kim Murphy RN, BSN

MD Anderson Physicians Network Coordinator

Thompson Cancer Survival Center

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For the First time in a very LONG time I feel HOPE in getting answers. Someone in the Medical Field HEARD me & IS taking some action. 

Sorry it's taken so long to get back I've been posting on Not Diagnosed yet.... Because I read where it said "JUST DIAGNOSED, IN TREATMENT OR FINISHED TREATMENT FOR IBC"  & thought it might be rude to post here. I apologize.

I'm keep you all in my thoughts & prayers....

hope09

Dear Angel, Hi Its Hope09, I am sorry to hear that your drs would not listen. What was the docs excuse you did not have this. It seems like these doctors expect you to have every symtom of this deadly disease before they will even think about dx it or giving the treatment for it. I am worried I go to a breast surgeon here soon and I am afriad because I dont have all the symptoms they are going to turn me away.  Do you ever get pains in that area like some is stabbing you. I am a waitress and last night I almost dropped all my paltes because the pain came out of nowhere. One syptom  i dont have is the skin changes I hope I dont, but it seems like thats what they look for first and theresearch I have done the first sign is the thickening of the breast tissue and pain dont the docs keep up on this stuff. We pay them enough. i really hope all goes well and will check back to see how you are doing. My thought s sre with you. Hope09

hope09

Dear Angel, Hi its Hope09 , I was reading through your messages, and I am curious as to how you are able to get ahold of Kim  Murphy at Thompson Cancer Survival Center. I dont know how much luck I will have when I go see this Breast Surgeon and it would be nice to have a back up plan . Please let me know thanks Hope09

angeltam

Yes, hope09 I do get shooting pains in my breast still although they ache all the time, as well as shooting pain in my underarm. My nipple on the left side hurts so badly and to touch it... let's just say I try not to even wash it but squeeze warm soapy water over it and rinse it with warm water as well the same way. I didn't know what "flattened" was but if it's what I read... I guess I have that after all because It does NOT react to cold like the other side at all. The color around it had a lighter appearance to it in some areas. My breast look purplish and bruised in most areas as well.

Today I should find something out.

Thinking and praying for everyone here.

angeltam

Thank you Gg08 for all the support. I would call them but I am so tired of being put off. I should get my insurance this week sometime and I'll go back to UT where the Doctor who did my diagnostic testing sent me to the surgeon for a biopsy (thinking he'd do it anyway). They said that when I get that Blue Care that they'd set me up with a Breast Surgeon in their office right away.

I had thought flatten meant just what it said... My left breast does not react to cold, I've even put Ice on it because I wanted to make sure (because these doctors have had me second guessing myself and I am SO MAD about that!) It gets a little erect but NOTHING like it used to and the other side does. Dealing with an itch I can't help... it feels as if it's so deep I can't even being to scratch it. Although I it hurts too much to even try. Tonight the pain just got too much, shooting through my breast and my nipple I took some pain medicine and I'm about to take a sleeping pill so that I might get a nights sleep and not be woken up by pain.

I appreciate ALL your support,help, kindness and prayers Gg08, I'm praying for you as well.

angeltam

Posted on other board but felt a need to post here as well....

When I changed tonight I noticed that my left nipple was not getting reacting like the other side (although it hasn't been lately) what makes it different tonight is that the skin around it is puffy and almost even with the nipple. Although you can see the nipple; it's slightly raised.  Now I'm getting worried... PLEASE just tell me it really is going to be okay..... I'm sorry.

I'm hurting & am about to take some pain meds so that I might be able to get some sleep.

Thinking and praying for everyone here

angeltam

Just an UPDATE....

I called the insurance company today which said it would kick in 2/07/09 (Saturday). I called UT Breast Center & they gave me the #'s to call for the Oncology Breast Surgeon's they use. I called, the lady who answered allowed me to speak & got a nurse to speak with me, the nurse is now calling the Breast Center (Who wanted the Biopsy done) & she is also going to speak with the Surgeon. So far it looks as if I will get in on Monday, I just want to know something anything...

Thanks for all your support. I'll let you know what they say.

Thoughts and prayers with you all.

angeltam

When I changed tonight I noticed that my left nipple was not getting reacting like the other side (although it hasn't been lately) what makes it different tonight is that the skin around it is puffy and almost even with the nipple. Although you can see the nipple; it's slightly raised.  Now I'm getting worried... PLEASE just tell me it really is going to be okay..... I'm sorry.

I'm hurting & am about to take some pain meds so that I might be able to get some sleep.

angeltam

The Breast Oncology Surgeon's office called a few moments ago and said that he's in surgery right now but wanted to see me tomorrow at 9am. I'm afraid to get my hopes up at this point but it is nice to hear someone an Oncologist IS wanting to see me.

When I called the other Breast Surgeon's office to ask them to fax the Surgeon my lab results that state I do NOT have an infection she started to ask a ton of questions... Who do you want them faxed to? Who is that? What group are they with? What happen... I answered and said that now my nipple besides being painful is flatten and I believe there is MORE going on that I want to rule out. She just said "okay, bye" ... that was it I don't understand why the 20 questions. I felt like telling her it doesn't matter FAX IT NOW!

angeltam

I sure will, thanks for all the kind words of encouragement.

It blows my mind how "BREAST Surgeons have very little knowledge of IBC and what they do know is NOT all the accurate. The fact that they think someone MUST have "orange peel" skin (and has to be BAD) means "NO chance of IBC at all, end of discussion". 

I do plan on writing to the paper about this matter, although I will leave names out but I am going to let them know that IBC NEEDS to be talked about and that doctors NEED to educate themselves more on the subject, that Breast Cancer CAN & DOES hurt with some forms. It is ashame and who knows how many women are being put off and end up finding out when it's too late or when very little can be done.

I've talked with hope09 & encouraged her to NOT give up but to push until she HAS a DX.

I'll let you all know what happens tomorrow. Thinking & Praying for you all.

God Bless,

angeltam

"The Doctors" that come on in the afternoons are going to do a show on IBC.... I know this because I wrote them the other day and if you go to their site you can second that. I can understand why it's called "The SILENT killer" when even "some" breast doctors don't understand it there are NEEDS to be education done. I'd also write Oprah and suggest it, the more people to do that the more she'll or whoever does the shows will consider it.

http://www.thedoctorstv.com/main/info_finder

angeltam

Your Welcome. The only way it's going to get out is if people just keep asking for it. It's ashame that IBC and the other forms of Breast Cancer aren't out there. Like I said they need to put on the back of the Breast Self Exam cards the signs of other Breast Cancers without a lump & they need to STOP saying "BREAST CANCER DOESN'T HURT" cause' MANY here can say differently.

I feel Blessed to have gotten the chance to have met ladies like you all. Praying for everyone.

angeltam

Maybe NOW after all this DARN time gone by maybe the Surgeon will listen to me.... I'm  in shock at what I saw in the mirror... what almost looks like little tiny hair follicle pits and cellulite looking on my breast! Is it what I think it is? Please tell me it isn't... I'm hoping I'm over reacting and it's not.....

I am SO MAD!!!!!!!!!!!!!!!! Right now! I do NOT understand how any doctor ANY can make someone wait! With the pain I've had constantly and the swelling, warm/hot breast! What in the world were they thinking!!!!!!!!!!!!!!!!!!!!!!!! I want to call those doctors up and SCREAM! As if all the other signs/symptoms weren't enough now this!

I AM SCARED!

angeltam

I wanted to post this here as well because there have been so many wonderful people who've been so supportive.

Believe it or not I am home. They took me back ASAP and did a biopsy of both breast and a few places on both. When he saw me he just looked at my breast with this blank look... I wanted to cry but sat there strong.... thinking they'll be plenty of time to cry later right now I NEED this man to hear me out. He saw just what I had been seeing slowly getting worse over time and said "Let's biopsy this" without talking to me. I told him my concerns while he was doing the biopsy and in not so many words he told me "we are having the SAME thought" and he didn't see why someone didn't do the biopsy sooner. He said that we will get to the bottom of all this and whatever needed to be done will not be delayed any longer.

Although all this has made me happy..... I am at a loss because I have to wait for the biopsy / path report. Although without any words he said it all...... I am numb and I am tired.

Thank you all for being so wonderful, the encouragement, the acknowledgment, the caring.... You are ALL MY ANGEL's! THANK YOU!

Caseysmom

Angel:

I agree with you 100% about having the symptoms of IBC on the back of the Breast Self Exam cards.  I will defently go to the doctors web site to second this. 

Thanks

Laura

angeltam

Thanks Laura.

I'm going to relax this weekend because no matter what I am sure I'll be okay because I have a wonderful BS on my side.

Thinking of you all & Praying for you as well.