Comments for Inflammatory Breast Cancer http://eraseibc.com/blog Education and Public Awareness Fri, 03 Feb 2012 18:37:16 +0000 hourly 1 http://wordpress.org/?v=3.2.1 Comment on Seeking Help for IBC by Patti http://eraseibc.com/blog/about/comment-page-2/#comment-855 Patti Fri, 03 Feb 2012 18:37:16 +0000 http://eraseibc.com/blog/?page_id=2#comment-855 Hi Nancy, I have only one major question. Is your Mom being treated by a doctor who understands IBC? There are many. She shouldn't have to be going through this much pain. Patti Hi Nancy,
I have only one major question. Is your Mom being treated by a doctor who understands IBC? There are many.
She shouldn’t have to be going through this much pain.

Patti

]]> Comment on Seeking Help for IBC by Nancy Wheeler http://eraseibc.com/blog/about/comment-page-2/#comment-854 Nancy Wheeler Fri, 03 Feb 2012 15:03:09 +0000 http://eraseibc.com/blog/?page_id=2#comment-854 I have so many questions, and don't know where to begin. I have been with my mother fighting this horrendous disease for a while now. Every photo, or description I see is exactly like my moms disease except for the horrible lesions, and scabs that are all over her chest and back. It is spreading like crazy, I would like to send pictures to some of these doctors to have for reference. I have not seen any later stage pictures that look like what my mom has. My main question is about the fact that my mother did not have both breasts removed initially, and now IBC has taken over her left breast. It is huge, and painful, and pulls and is making her life that much harder to deal with. Has anyone ever removed a breast from someone well into the disease, just for comfort, and quality of life?There is so much more to tell but I have gone on too long. I have so many questions, and don’t know where to begin. I have been with my mother fighting this horrendous disease for a while now. Every photo, or description I see is exactly like my moms disease except for the horrible lesions, and scabs that are all over her chest and back. It is spreading like crazy, I would like to send pictures to some of these doctors to have for reference. I have not seen any later stage pictures that look like what my mom has. My main question is about the fact that my mother did not have both breasts removed initially, and now IBC has taken over her left breast. It is huge, and painful, and pulls and is making her life that much harder to deal with. Has anyone ever removed a breast from someone well into the disease, just for comfort, and quality of life?There is so much more to tell but I have gone on too long.

]]> Comment on Welcome to our Foundation Blog by Jody http://eraseibc.com/blog/2011/08/17/hello-world/comment-page-1/#comment-851 Jody Thu, 02 Feb 2012 16:24:59 +0000 http://eraseibc.com/blog/?p=1#comment-851 <cite> Patti ~ I was sent by my g.p. to a breast surgeon 12/16 for a sore that didn't respond to antibiotics. Because of the education you are doing I'd learned that IBC needed to be ruled out! However two breast surgeons here in GR, MI (1 @ Spectrum and the 2nd at St.Mary's(Mercy) only did the MRI because I insisted!!! I want to let this go ... just don't understand why my breasts are at this moment feeling like my milk let down ... I haven't nursed since 1987:( So I am feeling pretty foolish and maybe it's some kind of psychosomatic thing... I'm feeling kind of lost... don't know how I can manage to get to and pay for ibc qualified biopsy??? Thanks for any direction you might give. Jody
Patti ~ I was sent by my g.p. to a breast surgeon 12/16 for a sore that didn’t respond to antibiotics. Because of the education you are doing I’d learned that IBC needed to be ruled out! However two breast surgeons here in GR, MI (1 @ Spectrum and the 2nd at St.Mary’s(Mercy) only did the MRI because I insisted!!! I want to let this go … just don’t understand why my breasts are at this moment feeling like my milk let down … I haven’t nursed since 1987:( So I am feeling pretty foolish and maybe it’s some kind of psychosomatic thing… I’m feeling kind of lost… don’t know how I can manage to get to and pay for ibc qualified biopsy??? Thanks for any direction you might give. Jody

]]> Comment on Welcome to our Foundation Blog by Patti http://eraseibc.com/blog/2011/08/17/hello-world/comment-page-1/#comment-850 Patti Thu, 02 Feb 2012 04:31:06 +0000 http://eraseibc.com/blog/?p=1#comment-850 Hi Jody, Sadly the major tests can miss "seeing" IBC. But a biopsy of the tissue in the area that is inflamed or swollen or skin changes, should be the definitive answer. What you are doing, and it sounds like your doctor is doing, is trying to RULE OUT IBC. The biopsy is usually done along with the tests. Remember that someone else reads the biopsy so making sure you are in the hands of people familiar with IBC is really important. I hope all will be well with you. Write back if you need any help. Patti Hi Jody,
Sadly the major tests can miss “seeing” IBC. But a biopsy of the tissue in the area that is inflamed or swollen or skin changes, should be the definitive answer.
What you are doing, and it sounds like your doctor is doing, is trying to RULE OUT IBC. The biopsy is usually done along with the tests. Remember that someone else reads the biopsy so making sure you are in the hands of people familiar with IBC is really important.
I hope all will be well with you. Write back if you need any help.
Patti

]]> Comment on Welcome to our Foundation Blog by Jody Brown http://eraseibc.com/blog/2011/08/17/hello-world/comment-page-1/#comment-849 Jody Brown Thu, 02 Feb 2012 00:28:08 +0000 http://eraseibc.com/blog/?p=1#comment-849 <code> I have experienced several symptoms over the last two months but have had negative mamograms, ultrasounds, and last week a clear bilateral breast mri. Does the mri "rule it out"... or if the pink and other symptoms continue... should I try to get to an ibc clinic??? Thanks for the awesome information/education you provide!!! Jody
I have experienced several symptoms over the last two months but have had negative mamograms, ultrasounds, and last week a clear bilateral breast mri. Does the mri "rule it out"... or if the pink and other symptoms continue... should I try to get to an ibc clinic???
Thanks for the awesome information/education you provide!!! Jody

]]> Comment on A Mothers Journey by Patti http://eraseibc.com/blog/2011/08/09/inflammatory-breast-cancer-a-mothers-journey/comment-page-1/#comment-847 Patti Wed, 01 Feb 2012 04:31:19 +0000 http://eraseibc.com/blog/?p=139#comment-847 Julie, thank YOU for writing. You will do fine either way, but will pray for no IBC. Now that you are educated you are so much better armed. Patti Julie, thank YOU for writing. You will do fine either way, but will pray for no IBC. Now that you are educated you are so much better armed.

Patti

]]> Comment on A Mothers Journey by Julie http://eraseibc.com/blog/2011/08/09/inflammatory-breast-cancer-a-mothers-journey/comment-page-1/#comment-846 Julie Wed, 01 Feb 2012 03:35:11 +0000 http://eraseibc.com/blog/?p=139#comment-846 Thank you for opening up your journey. I'm a 44 yr old mother of 5 and will be starting with the diagnostic mamo tomorrow at 1pm to see if what I have is IBC. Praying that its not but if it is I AM A FIGHTER and will get thru this. Thank you for opening up your journey. I’m a 44 yr old mother of 5 and will be starting with the diagnostic mamo tomorrow at 1pm to see if what I have is IBC. Praying that its not but if it is I AM A FIGHTER and will get thru this.

]]> Comment on Seeking Help for IBC by Patti http://eraseibc.com/blog/about/comment-page-2/#comment-841 Patti Wed, 25 Jan 2012 01:08:45 +0000 http://eraseibc.com/blog/?page_id=2#comment-841 Hello Sam, Sorry to meet like this, but thankfully you are living in the right place. MD Anderson in Houston has the first in the world IBC clinic. It's called the Morgan Welch Inflammatory Breast Cancer clinic and research program. Here is the link to the clinic: http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/breast/inflammatory-breast-cancer-clinic/index.html Yes Sam, you should get IBC ruled out. If you are thinking what is happening is not normal, and you are having pain as you say, ruling out IBC would be the best course. Let us know how you are doing Patti Hello Sam,
Sorry to meet like this, but thankfully you are living in the right place. MD Anderson in Houston has the first in the world IBC clinic. It’s called the Morgan Welch Inflammatory Breast Cancer clinic and research program.
Here is the link to the clinic:
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/breast/inflammatory-breast-cancer-clinic/index.html

Yes Sam, you should get IBC ruled out. If you are thinking what is happening is not normal, and you are having pain as you say, ruling out IBC would be the best course.
Let us know how you are doing
Patti

]]> Comment on Seeking Help for IBC by sam http://eraseibc.com/blog/about/comment-page-2/#comment-840 sam Tue, 24 Jan 2012 18:16:52 +0000 http://eraseibc.com/blog/?page_id=2#comment-840 i am asian indian and 45 years old male. I live in Houston, TX and would like to know where to go to get checked for IBC. Today i was having sharp pain on my right breast area. I had been having some pain on my back/left/and right sides. I found out that the pain can be related to IBC. I found about this only today. Around a year and half back, I had swellings in my armpit (first right and then left). My doctor gave me antibiotics. I had also seen red marks around my nipple and swellings. The swelings took some time to disapper but appeared back. I went to another doctor (internist) and he wanted me to take a scan. He wanted to rule out any lymphoma. I asked him if I could get some blood to test to rule out any other problem and that is what we did. The blood test came out fine. I didnt get a scan. Now i am worried after this bout of shooting pain around my breast. I dont have any swelling for all this time but occasionally i feel there is something going on around my armpit. I am not fully sure what. I had a physical last december and talke to my family doctor. He checked and said he didnt feel any swolen nodes. Plesae let me know if I need to check myself with a breast doctor to rule out IBC? thanks sam i am asian indian and 45 years old male. I live in Houston, TX and would like to know where to go to get checked for IBC.

Today i was having sharp pain on my right breast area. I had been having some pain on my back/left/and right sides.
I found out that the pain can be related to IBC. I found about this only today.

Around a year and half back, I had swellings in my armpit (first right and then left). My doctor gave me antibiotics. I had also seen red marks around my nipple and swellings. The swelings took some time to disapper but appeared back. I went to another doctor (internist) and he wanted me to take a scan. He wanted to rule out any lymphoma.
I asked him if I could get some blood to test to rule out any other problem and that is what we did. The blood test came out fine. I didnt get a scan.

Now i am worried after this bout of shooting pain around my breast. I dont have any swelling for all this time but occasionally i feel there is something going on around my armpit. I am not fully sure what. I had a physical last december and talke to my family doctor. He checked and said he didnt feel any swolen nodes.

Plesae let me know if I need to check myself with a breast doctor to rule out IBC?

thanks

sam

]]> Comment on Seeking Help for IBC by Dr. Kathleen Ruddy http://eraseibc.com/blog/about/comment-page-2/#comment-839 Dr. Kathleen Ruddy Thu, 19 Jan 2012 17:58:54 +0000 http://eraseibc.com/blog/?page_id=2#comment-839 TO ANSWER THE QUESTION ABOUT REMOVING A PERFECTLY NORMAL BREAST: The risk of contralateral breast cancer is approximately 1% per year: so what, exactly does that mean? It means that if you take 100 women with cancer in one breast and follow them for, say, 10 years, one woman per year will develop a cancer in the other, normal breast - that is, contralateral breast cancer, and at the end of ten years, ten women will have developed a new contralateral breast cancer. They will not have a greater risk of death as a result of these new tumors when compared to the other 90 women who did not develop a contralateral breast cancer. The risk of developing contralateral breast cancer is small enough that it seems medically unnecessary to remove a perfectly normal breast - provided that all studies indicate the other breast is, indeed, normal - for a 1 in 100 chance per year that you might develop a new breast cancer, a new cancer that could be very well treated even if it did occur (!) and that poses NO RISK to your survival. I am not a fan of removing normal breasts. I understand the fear. I understand how many surgeons and other doctors stand at the ready to remove completely normal breasts if the patient's wish and insurance will pay. But, really, why? The real risks and statistics ought to allay the understandable fear that a diagnosis of breast cancer (especially, inflammatory breast cancer) imparts. I just don't see the point of undergoing any further surgery that is unneeded and will not add one day to your life. You can be sure that others will disagree with me, but not based on the data, based on feelings, the most powerful one being fear. In my opinion, there are better ways to diffuse the energy that fear produces than to unnecessarily remove a perfectly normal breast. TO ANSWER THE QUESTION ABOUT REMOVING A PERFECTLY NORMAL BREAST:

The risk of contralateral breast cancer is approximately 1% per year: so what, exactly does that mean? It means that if you take 100 women with cancer in one breast and follow them for, say, 10 years, one woman per year will develop a cancer in the other, normal breast – that is, contralateral breast cancer, and at the end of ten years, ten women will have developed a new contralateral breast cancer. They will not have a greater risk of death as a result of these new tumors when compared to the other 90 women who did not develop a contralateral breast cancer.

The risk of developing contralateral breast cancer is small enough that it seems medically unnecessary to remove a perfectly normal breast – provided that all studies indicate the other breast is, indeed, normal – for a 1 in 100 chance per year that you might develop a new breast cancer, a new cancer that could be very well treated even if it did occur (!) and that poses NO RISK to your survival.

I am not a fan of removing normal breasts. I understand the fear. I understand how many surgeons and other doctors stand at the ready to remove completely normal breasts if the patient’s wish and insurance will pay. But, really, why?

The real risks and statistics ought to allay the understandable fear that a diagnosis of breast cancer (especially, inflammatory breast cancer) imparts. I just don’t see the point of undergoing any further surgery that is unneeded and will not add one day to your life.

You can be sure that others will disagree with me, but not based on the data, based on feelings, the most powerful one being fear. In my opinion, there are better ways to diffuse the energy that fear produces than to unnecessarily remove a perfectly normal breast.

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