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Topic: IBC=Inflammatory Breast Cancer
I haven't been on this site for quite a while now. In fact, I believe I've had 2 bouts with cancer since my last login.
Earlier this year, I was in a car accident. I was going to therapy, experiencing neck pain, shoulder blade and right arm discomfort and pain.
A few months ago I noticed my right nipple was inverted. It looked like a turtle's nose barely visible in its shell. The skin on my breast became a healthy looking blush, then pink. My stretch marks which once were like shallow canals radiating from my areola became like raised veins. It is described as orange peel.
I had received an email from my daughter earlier that described Inflammatory Breast Cancer. My symptoms sounded exactly what was described.
I went to my oncologist who examined me and said it looked like mastitis or cellulitis and put me on an antibiotic with an appointment for 2 weeks later. (Classic doctor reaction according to IBC)
I went for a mammogram and an ultrasound--neither detected anything but denseness of the breast, even when compared to my previous mammograms!
After 3 days I saw no change in my breast, so I called my surgeon and immediately went to him. He noted the symptoms and did a surgical biopsy 2 days later. It confirmed infiltrating lobular carcinoma. There was a 5.5cm tumor. The skin was cancerous. Ten days later I had a mastectomy. The surgeon still wouldn't call it IBC, and still hasn't. 27 of 27 lymph nodes were cancerous. There was a 6.5cm tumor which was cancerous.
My oncologist called me and told me I was right. I had Inflammatory Breast Cancer. Stage IIIc.
Ladies, this is a very fast growing and deadly cancer.
I've had an MRI and PET scan. Now I am having chemo and will have radiation, and of course more scans.
READ UP ON INFLAMMATORY BREAST CANCER FOR YOURSELF.
If I hadn't spoken up, I could be a lot worse off than I am now.
God bless you all.
Dixie
Earlier this year, I was in a car accident. I was going to therapy, experiencing neck pain, shoulder blade and right arm discomfort and pain.
A few months ago I noticed my right nipple was inverted. It looked like a turtle's nose barely visible in its shell. The skin on my breast became a healthy looking blush, then pink. My stretch marks which once were like shallow canals radiating from my areola became like raised veins. It is described as orange peel.
I had received an email from my daughter earlier that described Inflammatory Breast Cancer. My symptoms sounded exactly what was described.
I went to my oncologist who examined me and said it looked like mastitis or cellulitis and put me on an antibiotic with an appointment for 2 weeks later. (Classic doctor reaction according to IBC)
I went for a mammogram and an ultrasound--neither detected anything but denseness of the breast, even when compared to my previous mammograms!
After 3 days I saw no change in my breast, so I called my surgeon and immediately went to him. He noted the symptoms and did a surgical biopsy 2 days later. It confirmed infiltrating lobular carcinoma. There was a 5.5cm tumor. The skin was cancerous. Ten days later I had a mastectomy. The surgeon still wouldn't call it IBC, and still hasn't. 27 of 27 lymph nodes were cancerous. There was a 6.5cm tumor which was cancerous.
My oncologist called me and told me I was right. I had Inflammatory Breast Cancer. Stage IIIc.
Ladies, this is a very fast growing and deadly cancer.
I've had an MRI and PET scan. Now I am having chemo and will have radiation, and of course more scans.
READ UP ON INFLAMMATORY BREAST CANCER FOR YOURSELF.
If I hadn't spoken up, I could be a lot worse off than I am now.
God bless you all.
Dixie
Topic: RE: Q> About Breast Cancer
I don't know a thing about breast cancer, I just want you to know that I am thinking of you and wish you the best. I would call anyone and everyone till someone got you in when you need to get in. I hate that they make you wait and wait. I talked to my Ono doctors nurse she called me to tell me they wouldn't make me wait, that we got plans on the table. I will probably retake my labs because they changed the kit that they used to do the chromogrinin A test so that may be why I tested high, if it is still high after the second test then we are going to do every scan out there to find the little bugger. I know I felt 100% better after I knew what was going to happen. You have to take care of yourself and don't take no for an answer. Good luck and God Bless.
Marylin
Marylin
Topic: RE: Q> About Breast Cancer
I would call myself and see if you can move up the appt..
Why wait??
I was diagnosed a year ago and finished my last radiation in June after chemo and surgery....
It sounds like you are looking to have a biopsy done so you know what to do....
You might also want to call an oncologist because depending on what the biopsy shows- you might end up needing chemo before surgery....(you can always cancel)
Get the films in your possession and copies of all reports.....the surgeon and eventually oncologist will want to see everything....
Then after the biopsy- get those pathology reports, films, and slides. It is important to know if you are HER2 pos or negative...and a few other things the path report will show
They will release copies to you & often if you get them as they are done- noone will charge you that lovely 1.00$ per page so many Dr's are allowed to and do charge to make copies of records...
You may end up at many different Doctor's. You are the best person to have copies of everything to let them copy for your file.
NEVER give up the copies...always make sure you have one...
Here's an informative compilation of breast cancer treatment algorithms.
http://www.nccn.org/professionals/physician_gls/PDF/breast.p df (National Clinical Guidelines in Breast Cancer)
If you have any redness, swelling of one side, orange peel appearance to the skin- make sure the Dr. you call knows so they can get you in ASAP to rule out inflammatory breast cancer...
Bernadette
Why wait??
I was diagnosed a year ago and finished my last radiation in June after chemo and surgery....
It sounds like you are looking to have a biopsy done so you know what to do....
You might also want to call an oncologist because depending on what the biopsy shows- you might end up needing chemo before surgery....(you can always cancel)
Get the films in your possession and copies of all reports.....the surgeon and eventually oncologist will want to see everything....
Then after the biopsy- get those pathology reports, films, and slides. It is important to know if you are HER2 pos or negative...and a few other things the path report will show
They will release copies to you & often if you get them as they are done- noone will charge you that lovely 1.00$ per page so many Dr's are allowed to and do charge to make copies of records...
You may end up at many different Doctor's. You are the best person to have copies of everything to let them copy for your file.
NEVER give up the copies...always make sure you have one...
Here's an informative compilation of breast cancer treatment algorithms.
http://www.nccn.org/professionals/physician_gls/PDF/breast.p df (National Clinical Guidelines in Breast Cancer)
If you have any redness, swelling of one side, orange peel appearance to the skin- make sure the Dr. you call knows so they can get you in ASAP to rule out inflammatory breast cancer...
Bernadette
Topic: Q> About Breast Cancer
I have a very strong family history of breast cancer on my mother side. I lost a grandmother at the age of 56, A aunt at 38, Just a few year ago another aunt at the age of 54 of breast cancer. Plus my aunt that is 58 has breast cancer. And is going in for double remove of her breast,.
Plus my mother who is 70 just had breast surgery. But was lucky due to the fact that she was able to have the new type of breast cancer treatment . Where she went for five days a week for one week twice a day.
Here is my question . In march I went to my ob/gyn and they did the breast examine and did not feel any thing. So they sent me to have a monogram done with the one of the specialists in town. Two weeks later I got a call and they said they wanted me to come in for a flat plat mamagram and a sonogram. Because on the regular sonogram they thought they saw extra skin tissues. And not to worry because they did not feel it was a tumor or anything to worry about.
So yes it is my fault that I waited a few months to go in and have the extra testing done.
Seeing how my one and a half hour appointment turned into a two hour appointment.
Seeing How they found a deep benine tumor that is so deep and was unable to be felt thur the skin.
See I am earning my self to a breast surgeon office for her to tell me what She is going to do about it. But according to the office I can not see her for another 2 months.
My question is should I try and call to remake the appointment myself ir just wait till then and hope it does not grow.
Right now they have the area mark with a marker with a silver bead on it.
The one thing they said I have in my favor is the tumor is high up on the breast. And that having wls help them to see it this time around. Seeing how before my surgery I was a 60ddd and now they are a 38 d
I wish you all the best of luck and thank you all in advance
Taichi
Topic: RE: In a panic!
Katherine thanks so much for your kind words. I know I am probably over reacting but I really don't want to just let this take my life away from me. I am mad I guess is what I feel, more just worried. I am sure that if my brother wasn't in the hospital at this very moment that I would feel a bit different about all this. I was a very young 23 when my dad died from cancer and we watched him for many yrs fight the good fight. That was 30 yrs ago and things are so different then they are now. I am trying to find out if my brothers cancer is the same as mine. What I have is very rare, and if it wasn't for me having the WLS and having a wonderful caring WLS doctor I would be in the same shape as my brother is now a few yrs down the road because no one could find out what was wrong with me. I have Carcinoid cancer, and it doesn't take radition or chemo therapy well, they know I will have to have hormone therapy. This is some kind of hormone cancer. Strange I know, there are getting more and more people with it then ever before, and most of them are being treated for something else when they find out they have this. I have to get through this, I just have to. I have 7 kids from 18-35 and 5 granbabies. I want to see my great granbabies.
I better try and get to bed tonight thanks again for your kind words and I will take all the prayers you can mustar for me and I will keep you in mine. I know that prayer is going to be the only thing to get me through this. I have to put my faith in God that he wants me around for something more important that I need to do.
Marylin
I better try and get to bed tonight thanks again for your kind words and I will take all the prayers you can mustar for me and I will keep you in mine. I know that prayer is going to be the only thing to get me through this. I have to put my faith in God that he wants me around for something more important that I need to do.
Marylin
Topic: RE: In a panic!
You don't drown by falling in the water. You drown by staying there. Unknown Author
Failure is only a fact when you give up. Everyone gets knocked down, the question is: Will you get back up?
Marilyn, my heart and prayers go out to you and your brother. I am a colo-rectal cancer survisor as well as squameous cell carcenoma in my lymph nodes, pelvic area and stage 4 vaginal cancer.... and I know all too well how upsetting and nerve wracking those calls from the doc can be. Please know that you are not alone in this journey, you have the support of the board and those of us who have been down the road you are on now. I know it is easy for me to say be positive and not quite so easy for you to do.... But please do know that we are here for you. Something that has helped me get through my numerous rounds of cancer was that I got totally pissed off at cancer! I refused to allow "it" to win the battle. If there is anything I can do to help you through this difficult time, please drop me a note.
God Bless you and your family.
Katherine
God Bless you and your family.
Katherine
You don't drown by falling in the water. You drown by staying there. Unknown Author
Failure is only a fact when you give up. Everyone gets knocked down, the question is: Will you get back up?
Topic: In a panic!
I have been going to Omaha to a cancer doctor since they found out I had carcinoid colon cancer. Well my reg pcp called me today and said all my labs looked great but this chromgrainin A and she had no clue what it was for, and she told me it was up to 80 something and that normal is 30-50 so I have been up all evening researching and trying to find out about what's going to happen to me now!!! I had colon resection and they told me that there was some cells in my lymp nodes but they were minut, but I know how this works and if there is one there are usually more. So now I am wondering where it's going to be now. I am hoping it is still in my colon and not gone to my liver. Of all the things, my brother which is 7 yrs older then me is in the hospital right now with colon cancer, they found it about 6 months after they did mine. His has already got to his liver and he has been taking chemo for over a yr now, he isn't going to get any better he may never leave the hospital this time. He has congestive heart failure to, and is full of fluid on his lungs they put a drain in yesterday. I do not want this to happen to me, I do not want to put my family through this just to watch me die. I know that sounds strange but I don't want my kids to see me like that. Well thanks for listening and I know there's not anything anyone can do but I sure hope this isn't the begining of the end.
Marylin
Marylin
Topic: RE: wls, breast cancer and tamoxifen
You don't drown by falling in the water. You drown by staying there. Unknown Author
Failure is only a fact when you give up. Everyone gets knocked down, the question is: Will you get back up?
Margaret,
I am a cancer survivor as well but not breast cancer (colo-rectal, squamous cell in my lymph nodes and pelvic area and Stage 4 vaginal cancer) so I can't help you with your questions... but, I applaud you for taking such an active interest in your plans! Research, research, research is the best thing in the world you can do until you actually start your process to find a doctor right for you and make your surgery decision. You are so right with your statement that the extra weight increases your risk of the cancer returning. Good luck in your research, don't let up! And keep on the good health road! My best to your sisters as well.
Katherine
I am a cancer survivor as well but not breast cancer (colo-rectal, squamous cell in my lymph nodes and pelvic area and Stage 4 vaginal cancer) so I can't help you with your questions... but, I applaud you for taking such an active interest in your plans! Research, research, research is the best thing in the world you can do until you actually start your process to find a doctor right for you and make your surgery decision. You are so right with your statement that the extra weight increases your risk of the cancer returning. Good luck in your research, don't let up! And keep on the good health road! My best to your sisters as well.
Katherine
You don't drown by falling in the water. You drown by staying there. Unknown Author
Failure is only a fact when you give up. Everyone gets knocked down, the question is: Will you get back up?
Topic: RE: wls, breast cancer and tamoxifen
Me too! We are practically on the same time table. Rather than Tamoxifen, I'm on Arrimadex and Zoladex. I had the very same questions you do. Interested to know if anyone has any insight.
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