Comments for IBC Support Blog http://www.ibcsupport.org/blog News and ideas from the IBC support community Sat, 05 Jul 2008 15:52:11 +0000 http://wordpress.org/?v=2.2 Comment on Is IBC rare? by Surprised « Toddler Planet http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-36 Surprised « Toddler Planet Thu, 31 Jan 2008 11:52:58 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-36 [...] I was surprised to learn that inflammatory breast cancer, while rare, is not the rarest of breast cancers.  That distinction instead may well belong to Paget’s [...] […] I was surprised to learn that inflammatory breast cancer, while rare, is not the rarest of breast cancers.  That distinction instead may well belong to Paget’s […]

]]> Comment on Is IBC rare? by Marilyn 'Mare' Kirschenbaum http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-24 Marilyn 'Mare' Kirschenbaum Tue, 30 Oct 2007 15:33:24 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-24 Statistics are truly a sore spot. The majority of physicians do NOT report Inflammatory Breast Cancer to cancer registries. "They" report the patient has advanced breast cancer, Stage IIIb or Stage IV or Metastatic Breast Cancer. This also applies to death certificates. People are not aware of this and now realize there are States that do not have to report their patients with ibc to cancer registries. Therefore, statistics are not only outdated by the time the data is published but NOT accurate. As ibc advocates we are the only people who can change this. When a patient is diagnosed with ibc, they should not only get all of their reports and blood tests BUT make sure the words Inflammatory Breast Cancer is on their charts. Statistics are truly a sore spot. The majority of physicians do NOT report Inflammatory Breast Cancer to cancer registries. “They” report the patient has advanced breast cancer, Stage IIIb or Stage IV or Metastatic Breast Cancer. This also applies to death certificates. People are not aware of this and now realize there are States that do not have to report their patients with ibc to cancer registries. Therefore, statistics are not only outdated by the time the data is published but NOT accurate. As ibc advocates we are the only people who can change this. When a patient is diagnosed with ibc, they should not only get all of their reports and blood tests BUT make sure the words Inflammatory Breast Cancer is on their charts.

]]> Comment on Breast Cancer Doesn’t Always Start with a Lump by Breast Cancer Awareness Month http://www.ibcsupport.org/blog/2007/10/01/breast-cancer-doesn%e2%80%99t-always-start-with-a-lump/#comment-17 Breast Cancer Awareness Month Thu, 04 Oct 2007 17:24:15 +0000 http://www.ibcsupport.org/blog/2007/10/01/breast-cancer-doesn%e2%80%99t-always-start-with-a-lump/#comment-17 Hey guys ...Breast Cancer is something that we need to understand and learn about and support each other in our struggles ...As it is National Breast Cancer Awareness, we can all volunteer or donate ...I donate to my favorite BC organizations on Respectance ...there was no service charge (which is nice) ...But the point is to do something ...We can all make a difference! I encourage you all to take that extra step this month. Hey guys …Breast Cancer is something that we need to understand and learn about and support each other in our struggles …As it is National Breast Cancer Awareness, we can all volunteer or donate …I donate to my favorite BC organizations on Respectance …there was no service charge (which is nice) …But the point is to do something …We can all make a difference! I encourage you all to take that extra step this month.

]]> Comment on No biopsy, no problem? by Vassilis Ferentouros http://www.ibcsupport.org/blog/2007/06/12/no-biopsy-no-problem/#comment-11 Vassilis Ferentouros Mon, 06 Aug 2007 12:19:58 +0000 http://www.ibcsupport.org/blog/2007/06/12/no-biopsy-no-problem/#comment-11 If it is proven to be IBC (this can been done with FNA (fine needle aspiration) and Skin biopsy then it would be wise (very wise I can say) to proceed with Chemo as much as possible as for the tumor to shrink and then proceed with Survery... In Ioanna's Case( as per her doctor's and MD Anderson IBC Center ) the tumor after chemo was vanished...and them she proceeded with Modified Radical mastectomy...I Do know for sure that loosing a breast is not the best option mut considering that IBC is most invasive / aggresive and lethal type of breast cancer I consider MRM the best option. To finish I can say to beat a monster you must become an even worse monster If it is proven to be IBC (this can been done with FNA (fine needle aspiration) and Skin biopsy then it would be wise (very wise I can say) to proceed with Chemo as much as possible as for the tumor to shrink and then proceed with Survery…

In Ioanna’s Case( as per her doctor’s and MD Anderson IBC Center ) the tumor after chemo was vanished…and them she proceeded with Modified Radical mastectomy…I Do know for sure that loosing a breast is not the best option mut considering that IBC is most invasive / aggresive and lethal type of breast cancer I consider MRM the best option.

To finish I can say to beat a monster you must become an even worse monster

]]> Comment on Is IBC rare? by Pete Bevin http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-10 Pete Bevin Sun, 22 Jul 2007 03:05:05 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-10 There isn't really an accepted figure, but the best guess for the USA is somewhere between 10,000 and 25,000 per year. For the reasons I give in the article, the incidence rate is probably underreported. There isn’t really an accepted figure, but the best guess for the USA is somewhere between 10,000 and 25,000 per year. For the reasons I give in the article, the incidence rate is probably underreported.

]]> Comment on Is IBC rare? by WhyMommy http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-9 WhyMommy Sun, 22 Jul 2007 02:58:34 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-9 Is there a generally accepted number for the number of IBC diagnoses per year? I'm having trouble getting a handle on the real numbers from the information I've found to date. Thanks! Is there a generally accepted number for the number of IBC diagnoses per year? I’m having trouble getting a handle on the real numbers from the information I’ve found to date.

Thanks!

]]> Comment on IBC and age by WhyMommy http://www.ibcsupport.org/blog/2007/06/04/ibc-and-age/#comment-8 WhyMommy Mon, 16 Jul 2007 19:39:03 +0000 http://www.ibcsupport.org/blog/2007/06/04/ibc-and-age/#comment-8 Absolutely! I wonder how many of us are diagnosed quickly because of luck -- or slowly because of the opposite kind of luck. The word must be spread about this horrid cancer and how women and men and their doctors can recognize it more quickly. I was diagnosed 1 month ago today. I'm 34 with two baby boys, but I am lucky enough to live in Washington, D.C., where I got great treatment quickly. I've already had a ton of tests and my first chemotherapy treatment. I'm now trying to talk about this disease in my mommy-circles and anywhere else I can, and I'm so glad that you are too. I am talking about IBC on my blog this month at http://toddlerplanet.wordpress.com. Please feel free to come over and visit -- or let me know if I can contribute here in any way. So glad you're here. Absolutely! I wonder how many of us are diagnosed quickly because of luck — or slowly because of the opposite kind of luck. The word must be spread about this horrid cancer and how women and men and their doctors can recognize it more quickly.

I was diagnosed 1 month ago today. I’m 34 with two baby boys, but I am lucky enough to live in Washington, D.C., where I got great treatment quickly. I’ve already had a ton of tests and my first chemotherapy treatment. I’m now trying to talk about this disease in my mommy-circles and anywhere else I can, and I’m so glad that you are too.

I am talking about IBC on my blog this month at http://toddlerplanet.wordpress.com. Please feel free to come over and visit — or let me know if I can contribute here in any way.

So glad you’re here.

]]> Comment on No biopsy, no problem? by Jean http://www.ibcsupport.org/blog/2007/06/12/no-biopsy-no-problem/#comment-3 Jean Sun, 17 Jun 2007 03:23:02 +0000 http://www.ibcsupport.org/blog/2007/06/12/no-biopsy-no-problem/#comment-3 I believe I am the person mentioned in this posting. I saw my surgeon last week. I spoke with him for quite a while. He explained my mammo/Ultra results to me and my family. Then explained needle verses core verses excisional biopsys. His recommendation was the excisional ASAP, as he believed me to have IBC. He asked for my oncologist's name and said I would follow this surgery with chemo, then more surgery. After my exam, he asked me to speak with his surgical nurse and go over a few surgical procedures. I can not believe how rude she was. I should have seen the writing on the wall because when we entered her office she was fighting with another patient who had phone because she was worried about upcomming surgery! She should not have called us into her office until she had completed this call. She then carried on about terrible this person was and how she was runing her day! Long story short, she refused to set up surgery for last Friday and insisted I wait 3 weeks. I phoned my PCP as soon as I got home and she phoned the surgeon and got the surgery changed to this Friday. This same nurse called me and said even thought planned for Friday as she coul not reach my PCP for a pre-op it still might not take place Friday. (I was getting very upset at this time.) I told her no tto worry that I knew my Dr well enough to "walk-in" and get my pre-op. I do have a question for the group: Is there any major difference between the excisional biopsy verses a lumpectomy? My Dr said he would do this first, then chemo, then more surgery. If it's the same as a lumpectomy, isn't that dangerious tto do before the chemo? I believe I am the person mentioned in this posting.
I saw my surgeon last week. I spoke with him for quite a while. He explained my mammo/Ultra results to me and my family. Then explained needle verses core verses excisional biopsys. His recommendation was the excisional ASAP, as he believed me to have IBC. He asked for my oncologist’s name and said I would follow this surgery with chemo, then more surgery.

After my exam, he asked me to speak with his surgical nurse and go over a few surgical procedures. I can not believe how rude she was. I should have seen the writing on the wall because when we entered her office she was fighting with another patient who had phone because she was worried about upcomming surgery! She should not have called us into her office until she had completed this call. She then carried on about terrible this person was and how she was runing her day!

Long story short, she refused to set up surgery for last Friday and insisted I wait 3 weeks. I phoned my PCP as soon as I got home and she phoned the surgeon and got the surgery changed to this Friday. This same nurse called me and said even thought planned for Friday as she coul not reach my PCP for a pre-op it still might not take place Friday. (I was getting very upset at this time.) I told her no tto worry that I knew my Dr well enough to “walk-in” and get my pre-op.

I do have a question for the group: Is there any major difference between the excisional biopsy verses a lumpectomy? My Dr said he would do this first, then chemo, then more surgery. If it’s the same as a lumpectomy, isn’t that dangerious tto do before the chemo?

]]> Comment on Is IBC rare? by Vassilis Ferentouros http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-2 Vassilis Ferentouros Tue, 12 Jun 2007 05:36:16 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-2 What you have written is absolute true and what I would like to comment is that many doctors classify IBC as LABC Can this be true also? It widely accepted that the OS of IBC patients is far more worse than any other breast cancer. Can anybody tell me is this because of treatment delay or is it due to the aggressiveness of IBC?? Because if it is the only reason for the gloomy outcomes only the delays in diagnosis then the matter can be resolved through proper training of both the population as well as the doctors What you have written is absolute true and what I would like to comment is that many doctors classify IBC as LABC
Can this be true also?

It widely accepted that the OS of IBC patients is far more worse than any other breast cancer.

Can anybody tell me is this because of treatment delay or is it due to the aggressiveness of IBC??

Because if it is the only reason for the gloomy outcomes only the delays in diagnosis then the matter can be resolved through proper training of both the population as well as the doctors

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