inflammatory breast cancer

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Denise V.
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/2/2007 7:08 AM (GMT -7)   
for the past few months I have been feeling alot of pain in my left breast, faint red rash on bottom and a little swollen on one side.  You can also feel a hardening inside the breast where the swelling is located.  NO nipple discharge.  I do experience intense itching deep inside of the breast and scratch to the point of bruising myself but never relieving the itch.
I had an exam by a nurse practioner, who felt the large hardening spot and she ordered a mammogram.  I have no health insurance so I had/have to go to UMC here in Lafayette, Louisiana.
Had the mammogram, then I receive a letter telling me that I need a ultrasound, had that and then I am told that I need a biopsy of that area.    However, these two doctors/interns tell me that the mammogram and ultrasound did not show anything. ??????        I was given  a choice of having a biopsy right then and there or waiting a month to see if there were any changes.  I thought that I would be real tough and chose the month wait.  Once home I realized that I should not wait.  So I called UMC & scheduled an appointment with the breast clinic to have the biopsy done.
Once there I had to see a new intern who told me that breast cancer does not have any pain at all and that he thought I should be able to feel a solid round mass, not the hardened large "spot" that he also felt.  He refused to do the biopsy.
I had breast reduction surgery back in 1995 and was told by this new intern that he thought I was having post surgical reactions. ????????  12yrs later !!!!! He also told me that since I had no family history of breast cancer, since I am 40 yrs old that I am very low risk.  Although cancer runs on both sides of my family tree.  dad died at 42 yrs old of leukemia, mom at 58 of cancer (colon, liver) grandmother at 70 yrs old (lung, colon, ovarian) other grandmother (brain tumor) grandfather (throat cancer) on and on and on.......
My left arm is now aching off and on all of the time and my fingers are going numb.  My hand is clubing at times and my joints are hurting me.   I also (this week) started feeling aches & pains/cramps in my legs/joints.  I also have developed a cough and the feeling of it being hard for me to breath . I have NEVER been a smoker    I am incredibly tired.  feels like I could sleep forever.  It's affecting my job.  Just want to lay down and sleep all of the time.

I AM IN NEED OF A NAME OF AN INFLAMMATORY BREAST CANCER SPECIALIST IN THE LAFAYETTE LOUISIANA AREA.  
I do not have health insurance, but do keep a good cancer policy.   I can't keep going round and round with UMC.  I need to get to the bottom of this.  I am very scarred at this point.

Brnadebt
Veteran Member


Date Joined Jul 2005
Total Posts : 688
   Posted 5/2/2007 9:49 AM (GMT -7)   
Hi Denise

I would call back ASAP and insist upon a biopsy, in some breast cancers a biopsy is the only way to diagnose for sure. You will hear from alot of the other ladies here that will tell you the same thing. You have to be an advocate in your health battle because believe me sometimes you have to fight to get the testing done. Is there any other hospital you can go to? another surgeon that you could see? I had my biopsy done by a radiologist who also did my ultrasound. At 40 you are NOT too young for breast cancer.....that makes me mad hearing that another DR would say that, we have alot of women here that are much younger. I don't want to scare you but I do want you to get to the bottom of the problem.

Keep us posted, we care

L&H
Bernadette
 
 


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 5/2/2007 9:57 AM (GMT -7)   
We don't have anyone in your area on this board to help with a reference. Have you tried calling the American Cancer Society or looking on websites for names? I'm not really sure where an intern fits into the MD degree but I am pretty sure they have not yet gotten their license. They should be working under the supervision of a full teaching doctor. How can they refuse to do what a doctor suggested, or was it the nurse practioner suggested? IBC is not a cancer to mess with and if there is any chance that you could be diagnosed with it, the earlier the better, so I would not take this lightly. Other cancers in the family history are meaningful in breast cancer. Some more than others. I am no expert on this, but I attended a genetic seminar and that is where I learned there is interest in family members history of other cancers.

Anyhow I am suggesting you find a specialist somehow. If you can find nothing else, look in the phone book for an oncology center and call there and ask for help. Hopefully you will get someone who has some knowledge or who will direct you to someone who can help you. Also, MD Anderson in Houston is one of the best cancer centers. How far are you from there?

Good luck, let us know what happens. We care.
Hugs MK


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 5/2/2007 10:07 AM (GMT -7)   
I just Googled 'Breast Cancer Physician, Lafayette, LA' and got lots of information. There seems to be several specialists there, so try that. Also look in the yellow pages under Oncologists. I'm sure you can find someone, but I don't know how you would get a personal recommendation unless you find someone locally to help with a name. MK


Denise V.
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/2/2007 11:40 AM (GMT -7)   

Thanks for replying.  It means the world to me that someone is willing to listen.

It was the doctor in charge who suggested that I get the biopsy the first time that I chose to wait a month. 
They were going to do a ultrasound guided needle biopsy from several different spots from my left breast.  I really could kick myself for not having gone through with it.

Thanks for the advice & looking up info for me.  I will call a local oncology office to maybe get a name of a specialist.  And if all else fails, I will drive a few hours to Houston to get answers.

Thanks again,

Denise


lemonz
Veteran Member


Date Joined Jul 2003
Total Posts : 1090
   Posted 5/2/2007 12:06 PM (GMT -7)   
I am one of the fortunate people that had a doctor that recognized my cancer for what it was and took a biop. I could not lift my arm. Discoloration was really strange to look at. Best discribed as I looked like I had taken a beating on my breast and it was strange colors of purple and red and orange. Many doctors do not know IBC if they fall over it. One thing that all the patients with this doctor had in common, was the fact that we all had very strong heat coming from the discolored area. My discoloration started on the side and was working its way across. I saw others that were not like mine. I think that is what makes it so very difficult. The only biop. they did was in the axillia. He explained that it was acting like a screen to catch the cells and that was a good way to verify what we were dealing with. Of course his face told me he did not doubt the outcome. There was no actual tumor in my breast. That is what makes IBC so difficult. The axillia (basically in the arm pitt)was over 5 cm. That is why I had chemo first. IBC should be treated with chemo first. Even with the new trials I have not heard of one that does not do chemo first. I am sorry to say I know of no one in your area. One thing I know I still have my hand doing the cramping thing and the numbness in that arm. I would push what ever I had to push to get seen by someone.
How wonderful it would be to see Angels where there are only clouds. How sad it would be to see clouds where there are Angels.
 
 


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 5/2/2007 3:02 PM (GMT -7)   
Hi there...sorry you are going through all this mess. Whoever taught medical professionals that BC does not hurt needs to have his/her head knocked off. That has to be one of the biggest myths of all. But the others have given you good advice. Not to dwell on doctors tht may be incompetant, let's dwell on getting you the right evaluation, and hopefully it turns out to be much ado about nothing. IBC is sneaky and does not play by the rules, and can be easily missed because it is unusual in presentation. Since the director ordered the tests to begin with, can you talk to him about getting the tests that you need?

Be your own best advocate, get copies of all your reports and tests and follow your instinct.

Keep us posted!
Lori


Denise V.
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/2/2007 3:20 PM (GMT -7)   

Thank you for your support Lori and all who have answered my questions/concerns.

I will keep you all posted.

Thanks again.

Sincerely,

Denise


Rhoda
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 5/3/2007 6:18 PM (GMT -7)   

Another avenue to check for assistance is with your State Health Department.  They may have a "Woman's Program" that could possibly assist with getting tests done.

Good Luck.  My prayers are with you.

Rhoda


Denise V.
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/3/2007 6:51 PM (GMT -7)   

thanks Rhonda.

I will look into that.


wackygal
Veteran Member


Date Joined Jul 2003
Total Posts : 857
   Posted 5/6/2007 5:13 PM (GMT -7)   
Denise- Please keep us posted on your progress, and we hope you have that biopsy soon. Just remember, YOU are your own best advocate, and if one doctor won't listen, you can sweetly ask to see another one. They'll get the hint that you're not playing around and won't take no for an answer. IBC is nothing to fool with; ask them if they can recite the symptoms of IBC! They probably can't.
Keep your chin up, and we'll be praying for a good biopsy outcome. Hugs, Stefanie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/8/2007 6:22 AM (GMT -7)   
The most powerful words in dealing with doctors "Are you refusing to treat?"

Marcismine
New Member


Date Joined Jul 2007
Total Posts : 1
   Posted 7/12/2007 11:49 AM (GMT -7)   
To Denise V.....I am in Lafayette, La. and looking for a surgeon to ruleout IBC so if you can tell me what/who you've done, I'd appreciate it.
Have you gotten a dx? Does anyone else know about Denise?
Thanks.
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