Thank you for educating us and treating this rare cancer. I was diagnosed stage 3C HER2+ in Dec 2022. The hardest part was getting through numerous doctors to finally have someone believe me and send me to our local cancer clinic as my symptoms were very mild. It took 6 weeks. My symptoms were swelling and heat in the breast. I was 54 and there was no other suitable explanation. I was already convinced I had IBC and once the medical system finally listened my treatments started immediately. I was fortunate and chemo worked for me. I was given PCR at the time of mastectomy and have been now out of treatments for almost 9 months. IBC has a high recurrence risk so I will forever be on my toes but also living this bonus life I was given to the fullest.
congratulations on PCR, what chemo meds did you receive? my IBC 3b HR+, skin,lymph nodes. after mastectomy, clear margins but had residual, 9 out of 10 lymph nodes were positive. had 30 sessions of radiation. chemo/surgery/radiation began1st week of April thru December 24. initially dx with infection, given antibiotics. i had same symptoms as you.
@ I had 8 rounds of chemo. The first 4 were Red Devil and the last 4 were Taxol. I had 30 sessions of radiation including 5 boosters. They were all done with bolus. It’s a long road but we are both here thanks to the medical care. All the best to you!
I just had a biopsy yesterday to see if this is what is going on with me. I have lost a dear friend to it 10 yrs ago. My child's teacher had it in her late 20's back in the mid 90's. It is so sad that it is so hard to spot and get the diagnosis early enough to not be metastatic. Thank you for this video, good informative discussion
Doesn't an infection anywhere in the body influence blood test results? I have been prescribed a bunch of antibiotics over the last 2 months with no results. My blood work looks great, and my son is 24, so it isn't likely mastitis. My cousin died from IBC, and my family has been plagued with rare cancers on both sides. I have had a CT that showed a 2cm mass, but now I am waiting for a diagnostic mammogram....while the pain in my breast/armpit is rapidly increasing. 😢 How can I get the tests to rule out or confirm IBC more quickly?
So just to confirm...mamograms DO pick up inflammatory breast cancer. I have heard so many stories of women with inflammatory breast cancer who had mamograms that said everything was fine and so were their ultrasounds
I've had an area of skin about an inch tall and about 2 inches wide around the top of my right nipple. Started small a few months ago, more noticeable today. Mammogram on 11/1, clear. Ultrasound on 11/22, clear, and the tech made sure to go over that area and breast many times. Not messing with this - seeing my ob gyn on Thursday.
@@flowers3036 No change in skin color, no skin thickness felt, no inverted nipple, no discharge, so far, but other changes have become more noticeable over the past few months. I do feel a burning sensation at times, not regularly. Sometimes the nipple appears to be pulled by the skin, with its shape changing, and then it goes back to normal. Usually, when I look at the side outline of the breast, the breast curves normally, then dips one inch from the edge of the nipple to the edge of the nipple. Sometimes it goes back to normal. Today the curved part seemed larger than normal (this was a first), maybe swollen, then went back to normal. It's all odd. Symptoms don't fit inflammatory or triple negative breast cancer completely but that doesn't necessarily mean anything. I have an appt this Thurs. Hopefully I won't have to fight to get answers.
Redness Swollen Orange peel skin Heat Rapidly occurring within a month No specific mass Defuse in breast - edema/swelling with mammogram Flat nipple Or retracted nipple Incorrect diagnosis of mastitis Another benign infection ductal ectasia can be treated with antibiotics Symptoms must improve with antibiotics for it not to be IBC
It would be nice if some of these videos would show actual pictures.
Thank you for educating us and treating this rare cancer. I was diagnosed stage 3C HER2+ in Dec 2022. The hardest part was getting through numerous doctors to finally have someone believe me and send me to our local cancer clinic as my symptoms were very mild. It took 6 weeks. My symptoms were swelling and heat in the breast. I was 54 and there was no other suitable explanation. I was already convinced I had IBC and once the medical system finally listened my treatments started immediately.
I was fortunate and chemo worked for me. I was given PCR at the time of mastectomy and have been now out of treatments for almost 9 months.
IBC has a high recurrence risk so I will forever be on my toes but also living this bonus life I was given to the fullest.
congratulations on PCR, what chemo meds did you receive?
my IBC 3b HR+, skin,lymph nodes.
after mastectomy, clear margins but had residual, 9 out of 10 lymph nodes were positive.
had 30 sessions of radiation.
chemo/surgery/radiation began1st week of April thru December 24.
initially dx with infection, given antibiotics. i had same symptoms as you.
@ I had 8 rounds of chemo. The first 4 were Red Devil and the last 4 were Taxol.
I had 30 sessions of radiation including 5 boosters. They were all done with bolus.
It’s a long road but we are both here thanks to the medical care. All the best to you!
I just had a biopsy yesterday to see if this is what is going on with me.
I have lost a dear friend to it 10 yrs ago. My child's teacher had it in her late 20's back in the mid 90's.
It is so sad that it is so hard to spot and get the diagnosis early enough to not be metastatic.
Thank you for this video, good informative discussion
Oh wow! To know 2 people that had this! I thought it was very rare!
Doesn't an infection anywhere in the body influence blood test results? I have been prescribed a bunch of antibiotics over the last 2 months with no results. My blood work looks great, and my son is 24, so it isn't likely mastitis. My cousin died from IBC, and my family has been plagued with rare cancers on both sides. I have had a CT that showed a 2cm mass, but now I am waiting for a diagnostic mammogram....while the pain in my breast/armpit is rapidly increasing. 😢
How can I get the tests to rule out or confirm IBC more quickly?
ask for biopsy
@@breemorrison901 Skin biopsy would give an almost immediate result.
So just to confirm...mamograms DO pick up inflammatory breast cancer. I have heard so many stories of women with inflammatory breast cancer who had mamograms that said everything was fine and so were their ultrasounds
I've had an area of skin about an inch tall and about 2 inches wide around the top of my right nipple. Started small a few months ago, more noticeable today. Mammogram on 11/1, clear. Ultrasound on 11/22, clear, and the tech made sure to go over that area and breast many times. Not messing with this - seeing my ob gyn on Thursday.
Is the skin red
@@flowers3036 No change in skin color, no skin thickness felt, no inverted nipple, no discharge, so far, but other changes have become more noticeable over the past few months.
I do feel a burning sensation at times, not regularly. Sometimes the nipple appears to be pulled by the skin, with its shape changing, and then it goes back to normal.
Usually, when I look at the side outline of the breast, the breast curves normally, then dips one inch from the edge of the nipple to the edge of the nipple. Sometimes it goes back to normal.
Today the curved part seemed larger than normal (this was a first), maybe swollen, then went back to normal.
It's all odd. Symptoms don't fit inflammatory or triple negative breast cancer completely but that doesn't necessarily mean anything. I have an appt this Thurs. Hopefully I won't have to fight to get answers.
@@flowers3036 Mammogram did not see my IBC and neither did an ultrasound. The first scan to show it was a breast MRI.
@@northwestcoastalcharters18what were your symptoms how long did it take before you got a diagnosis
Redness
Swollen
Orange peel skin
Heat
Rapidly occurring within a month
No specific mass
Defuse in breast - edema/swelling with mammogram
Flat nipple
Or retracted nipple
Incorrect diagnosis of mastitis
Another benign infection ductal ectasia can be treated with antibiotics
Symptoms must improve with antibiotics for it not to be IBC